Goodbye Regret

Saturday, February 7, 2015

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, 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.

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The Piercing: Or How a Needle Through the Nose is Like an Arrow To My Heart

Sunday, October 5, 2014

Last week was my daughter’s 17th birthday. So much goes through my mind when I think about how quickly my children are growing up. Mostly, I think about how they’re doing so without their dad. It’s tough parenting without Kevin, but not nearly as tough as growing up without him must be. They've both done so very well, despite so much loss around us. I am grateful that they have family and friends to comfort and cheer them.

For her birthday, my daughter wanted to have her nose pierced. A few of her friends have small gems on their noses, and she thought this would be a way of setting herself apart. She’s a pretty quiet young woman, and I think small ways of declaring her independence and individuality are important to her.
So off we went to the piercing salon. We first drove to the tattoo parlor which also does piercings. I know because I had my ears pierced there last year. Before that, I was there to get a tattoo. I shared that experience with my son. Just one week into his college freshman year when his dad died, he returned home over a crisp fall weekend and told me that he was getting a tattoo. I know he was a bit surprised when I didn’t argue, and even more surprised when I said I would join him. I had never previously considered getting a tattoo. In fact, I thought the process to be dangerous and frightening, and the end result to be unattractive and too permanent.

But my outlook and opinion on nearly everything changed after Kevin passed away. Then, a tattoo became a permanent way to mark his impact on my life, our life together, and the memory of him that I wanted to hold onto. I knew that I may someday remove my wedding band (which I’ve done), and a tattoo would be something that couldn’t be removed. My son would have the words “Living it Up” tattooed onto his chest, over his heart. Kevin’s nephew also joined us, and had the same words etched into his side along his ribcage. I had them written in a nice script, just above my right ankle, along with a hummingbird. 

Kevin had a very close relationship with my uncle, G.W. Bailey. G.W. was one of the strongest, sweetest men I’ve ever known. Whenever anyone asked him how he was doing, that was his reply: “I’m living it up.” He maintained that reply even through ten long years of progressively worse Parkinson’s disease. Uncle G.W. died just after Kevin’s first diagnosis, and Kevin felt it important to make this cheery response a part of G.W.’s legacy. He committed himself to responding to everyone that he was living it up, even on his worst days. He named his carepages blog Living It Up, and told the story of Uncle GW whenever anyone asked. So it was only fitting that we would have those words inscribed onto our flesh with a needle and ink. In addition to the tattoo itself, there was certainly something about the act of the tattoo—especially the pain involved—that felt good. And it was certainly, aside from childbirth, the most painful hour I’ve ever endured. So many times I had wished to take just a bit of Kevin’s pain. Taking it in this way was only symbolic, but it was for me, a powerful and welcome symbol.

Getting my tattoo.
It was also, in an odd way, a good bonding experience for my son and me. It was a way, I think, of telling him that I understood a little of what he was experiencing, that I would always be there for him, that I wouldn’t let him get away with everything, but that I would support him “to the pain” and share my own pain with him. I’m glad I did it, and glad that we did it together.

My daughter is considering a tattoo when she turns 18. It will also say “living it up.” But for now, she was happy with the nose piercing. We lacked the sufficient ID to get the piercing done at the tattoo parlor, so we headed home to get her birth certificate and then to the piercing salon closer to our house. We walked into the brightly lit salon on a busy Ann Arbor street just after rush hour. The requisite large, bearded man with many posts and hoops through various appendages was there ready to explain the process and the necessary follow-up care. 

I waited outside the tiny room, unable to watch the needle pierce her skin, and considered whether this was a good thing or not. As body art goes, this is pretty small. When she goes on college or job interviews, or meets her first serious boyfriend’s parents, she can easily remove it and it will look like nothing more than a freckle. But I still questioned whether it was the right thing to support her in this. And of course, it is only my decision—there is no other parent with whom to consult, debate, weigh the options of letting her do it versus having her not speak to us for weeks. The decision is only mine.

I worry sometimes that she and I spend too much time together. I want her and her brother to be ok with leaving home and trying new things. I want her to live every moment of her life fully, starting now. And yet, the thought of my children moving on weighs heavily. It does for most parents of almost-adult children, I’m sure. But it’s not just about having my babies grow up and establish lives of their own. For me, it is one more loss; one more thread to Kevin and to our old life that is fluttering in the wind. All I can do is stand and watch as it floats away. It is also one more reminder of all that he is missing; of all that we are missing together as a family. This year especially, as she enters her senior year of high school, my heart aches that her dad isn’t here to share in her last dance performances, her college acceptances, her prom and her graduation.

Seeing my little girl sit up from the padded table on which she was laying, with tears rolling down her face (“I’m not crying, it just made my eyes water!”), and smiling when she looked in the mirror, I’m glad I was there for this little experience. As she grows older, there will be fewer times when she wants her mother along on her adventures. I’ll continue to work on my ability to nudge my children from the nest, hoping that these times we’ve spent together—both the good and the challenging, have created a relationship that they, as much as I, will want to nurture forever.

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Reading My Way Through: How CS Lewis and I Will Never Again be Bipeds

Monday, August 25, 2014

As I near the fourth anniversary of Kevin’s passing, I’m revisiting C.S. Lewis’ A Grief Observed. I rarely read a book a second time, even one I like very much. Kevin loved to read his favorite books again and again, as do our children, but not me. Reading Lewis again seems different, though. Just as he observed his grieving process—especially as it related to his faith and the steadfastness of that faith—I have attempted to observe and chronicle mine. So reading the book now is much different than when I read it a year ago or four years ago.

This “meta” experience isn’t easy, and I think, were I not one who loves to write, I probably wouldn’t be constantly asking myself how I feel about things, or taking stock of where I am on this journey. As Lewis said, “Part of every misery is, so to speak, the misery's shadow or reflection: the fact that you don't merely suffer but have to keep on thinking about the fact that you suffer." Regardless of this possibility of added pain caused by reflection on the pain, it has been helpful to have Lewis’ thoughts with me as I travel, and to read them again from a different place than when last I picked up this little book.

I relate to many of the thoughts and examinations in the book, not just about grief, but about memory, love, and belief. As with the very best books and essays, it causes me to self-reflect; to ask myself not only about where I am in the process, but also about feelings and emotions that I’ve had most of my life.  I have experienced a significant amount of loss in the last five years—Kevin, both of my parents, our minister, a very close friend and mentor, two other long-time friends, the daughter of a very dear friend, the sons of two other close friends. It is impossible to make sense of any one of these losses alone, much less when listed all together.  It is quite an understatement, perhaps, to say that grief is just a part of my life now.

As the evenings begin to have a tinge of chill and each day becomes just a moment or two shorter, grief begins to pass over me like a cold-front moving across a weather map. I hear a school bus out on a practice-run through the neighborhood and it triggers the memory of the events of September 7, 2010 (the first day of the school year) as though they happened yesterday. Over time, grief’s hold loosens a bit, then gathers force and becomes more powerful, only to diminish again, sometimes for days, sometimes now for many weeks. Lewis was genius at finding metaphors for grief that so accurately describe its ebb and flow, its cycles, and its power:
“No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing.”

“Grief is like a bomber circling round and dropping its bombs each time the circle brings it overhead; physical pain is like the steady barrage on a trench in World War One, hours of it with no let-up for a moment.”

“Getting over it so soon? But the words are ambiguous. To say the patient is getting over it after an operation for appendicitis is one thing; after he’s had his leg off it is quite another. ..If it heals, the fierce, continuous pain will stop. Presently he’ll get back his strength and be able to stump about on his wooden leg. He has ‘got over it.’ But he will probably have recurrent pains…perhaps pretty bad ones; and he will always be a one-legged man. There will be hardly any moment when he forgets it. At present I am learning to get about on crutches. Perhaps I’ll be given a wooden leg. But I will never be a biped again.”

Lewis’s wife Joy Davidman died of cancer and he writes eloquently and accurately of his inability to share her pain as completely as he wishes he could.  As for grief after her death, Lewis writes about the days when he feels better, and the guilt and shame that come along with that, the fear of losing memories. Lewis is coming to terms with his faith as much as with his grief, asking the question of where God is in this misery. His words, his doubts, his own inability to reconcile, they come to me like a cool drink.

If I were to characterize my own feelings of grief’s visitations into my life, I suppose my metaphors would be more current, and I know they would be far less beautifully wrought than Lewis’. 

The early grief, I would say, is like having a plastic bag over your head. It causes an odd and exhausting vigilance as you live somewhere between wanting to grab at every bit of life and wanting to succumb. There is a sense of clawing, of clamminess, a shortness of breath. I recognize Lewis’ feelings like fear, along with an utter confusion and disbelief as to why this happened, how it could happen, why life appears to be going on for everyone else. It is surprising how debilitating is the inability to make sense of anything.

The next phase is like walking through life with something akin to an anvil chained to your leg. It is a heavy weight that causes physical aches, deep exhaustion, frustration. But given the opportunity to unbolt the lock and release the weight from its attachment to you, of course you say no. To release the weight, you fear, is to give up memories, to turn away, to say a final goodbye, which cannot happen, and would be an equal loss all over again. It is a time of slow trudging, when many offer to release you from the heft, or hope for you that it will happen soon, but you wave their thoughts away, shoo them from their attempts to remove the chain. You cling equally to memory and pain and are confounded at how much you need both.

As more time passes, the anvil becomes a heavy pack, and then a cloak. A bit lighter, less suffocating, at times even as comforting as your grandmother’s quilts. Like the quilt, there are different fabrics—still some anger, some confusion, patches of sadness. You study the stitching, the threads that link past to present, you notice they continue on, as do you. Memories become more accurate (we did fight, didn’t we? Yes, there was that time he made me angry, or another time I caused him to not speak to me for days). Reality sinks in, but still you wonder, how have two years passed, then three?

Then one day, you awake and find the grief has somehow become cellular, a part of your blood and skin and hair; a separate DNA, but one that makes up your being as completely as that which you were born with. It still occasionally brings sadness, loneliness, or bits of rage. But you are alright with the fact that a song or photo or the flash of a hummingbird near your shoulder will make you pensive. You understand that the best parts of your life will be shrouded in something called "bittersweet." But it’s ok. Like Lewis’ one-legged man, you are different, never again to be the person you were before, but thinking that you want to learn to walk (and laugh, and dream, and love) again. 

Reading has always been a big part of my life and it has helped in multiple ways through grief: to understand the universal truths of the process or just to inhabit someone else's experience for a little while. In addition to A Grief Observed, I’ve also revisited old favorites like Faulkner’s As I Lay Dying, The Diving Bell and the Butterfly by Jean-Dominique Bauby,  and James Agee’s lovely A Death in the Family. I refer often to Anne Lamott’s, Stitches, Plan B, and Help, Thanks, Wow (and wish I could have her on speed dial). I’ve also found great comfort in Roger Rosenblatt’s two books, Making Toast and Kayak Morning, the very powerful book Wave by Sonali Deraniyagala, Love and Death by Forrest Church, Joyce Carol Oates’ A Widow’s Story, and both The Year of Magical Thinking and Blue Nights by Joan Didion; all nonfiction. I’ve also enjoyed and have been helped along by a variety of fiction works like The Translator, by Leila Aboulela, Cheryl Strayed’s Torch, A Very Easy Death by Simone de Beauvoir, Christopher Isherwood’s A Single Man, Doug Trevor’s short stories The Thin Tear in the Fabric of Space, John Greene’s The Fault in Our Stars, Jack Gilbert’s poetry collection Refusing Heaven, and Volumes One and Two of The Cancer Poetry Project. I’ve yet to get to Roger Ebert’s memoir Life Itself, but I hope to do so soon.   
None of these books mirror my exact experience. Instead, they expand my own awareness of how we all deal with feelings provoked by death, loss, and grief, and how we all manage to get through.

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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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