Of Losing and of Letting Go

Monday, September 7, 2015

Today marks five years since Kevin died. I still often live in a state of disbelief that it has been so long since I last saw Kevin, last spoke to him, last said goodnight or good morning, or all the other million little things that make up the day of two people who live together and love each other.  I am still surprised at how time can simultaneously seem to rush forward and stand still. It has been forever and it has been no time at all.

We have moved on, mostly by putting one foot in front of the other and trying our best to live in a way that would make Kevin proud. I think there are more smiles and laughter these days though the most fun times still invoke the realization that Kevin is missing. That feeling will never leave my life, nor do I want it to. And indeed he has missed so much, especially this past year with my daughter’s high school graduation and delivery to college.

It is this added grief that has marked these past 365 days as different, indeed harder. This year has brought together the grief borne of both loss and of letting go. They are two different kinds of grief, but they have equal weight in my heart. I know I must let go of my children, and believe that Kevin and I did the best we could to raise them to be strong, thoughtful, caring, creative people. I see so much of their father in their appearance, their actions, their mannerisms, and their thought processes. I am grateful that his presence lives on in them so brightly. But to say it is easy to watch my children fly away would be a complete lie. If I could have them back in the house living with me, I would do it in a minute! What is this cruel job of parenting that our work is to shower all the love and patience we have upon our children in order to make them capable of living without us?

I have thought a lot lately about the so-called “sandwich generation” of which I was very much a part. It seems about ten years ago much was written about us—those people who, through coincidences of birth, marriage, and childbearing timing, were caring for both elderly parents and young children. I was firmly in that sandwich. Born to older parents (mom was 38 and dad was 43 when I came along), and delaying childbirth myself until I was 29, I spent several years caring for loved ones on both ends of the age spectrum. I remember having a conversation with Richard Russo, one of my very favorite authors. He was planning a trip to Ann Arbor for a book signing and I was involved in the planning. He explained that his schedule was iffy because of this very thing—an 85-year-old mother and a 19-year-old daughter, both of whom needed him. I mentioned an epiphany I had recently had: that a big part of the problem with both of these groups is that they each wish for more freedom than is good for them: young people because they aren’t mature enough to handle it, older people because it is physically risky. Yet as caregivers, it was our responsibility to keep them safe, to say no to dangerous desires.  At the time I had both a 16-year-old and an 88-year-old arguing with me about how often and how far they could drive. It was a challenging time to maneuver through sanely.

Now, my parents are both gone, and I have taken my youngest to college. Of course, I have had the added loss of my husband during that time, which makes this even harder. So often in the past five years, I have made decisions on my own, wondering if it was the right choice, if it is what Kevin would have done. I constantly question whether I’ve helped my kids through their time of grief, if I showed them my own grief and vulnerability often enough. I grapple with balance, with encouraging them to be on their own all the while fearing their leaving. Simultaneously, I try to shrug off the feeling of being an “adult orphan” though many times that’s how I feel. I wish for my parents’ advice and counsel, for them to be here guiding me in my own parenting, and sharing in the accomplishments of their grandchildren, whom they cherished beyond measure.

So I wonder, what becomes of us sandwich generation folks once the "bread" has been removed? We are dealing with two different kinds of grief, but it is grief nonetheless. One form of bereavement brings pain, loss, anger, sadness. The other is differently colored, with pride, hope, and the ability to smile through the tears. I was completely unprepared for the first, but had my children’s entire lifetime to prepare for the latter. 

Preparation doesn’t make it any easier I am finding. Loss, whether through death or letting go, is painful and heart-wrenching, it just is. My heart swells with satisfaction and delight at the sight of my son and daughter strolling across their respective college campuses, working at their part-time jobs, or handling difficult situations on their own. In the past few weeks alone they’ve signed leases, closed and opened bank accounts, settled in with perfect strangers, and dealt so maturely with a broken heart. All the matters of adult life for which I hope I have prepared them but which I must admit, I’d rather still be doing for them. 

Rarely do we truly realize how important it is to be needed in the midst of the needing time. When we’re deep in it, it feels like muck that holds us back, that weighs us down, that won’t let us have a moment’s rest; like quicksand that leaves you gasping for breaths and flailing to keep some of your own identity and autonomy. Yet, sit long enough on dry land without that needing, and one realizes quickly how painful it is to feel parched and arid, how much the needing, while taking your autonomy, was also giving you purpose and identity and life. 

Kevin loved his children so much, and worked so hard to be the kind of parent he hoped to be. In the end, he also fought so hard to stay here with them. On the fifth anniversary of Kevin’s passing, I honor his memory by tearfully and begrudgingly celebrating the independence of our children.

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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, 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.

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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. He understands that those of us who grieve are working, working, for an answer, a solution, to questions that will never be answered. Like the mathematician filling the chalk board with formulas and being foiled once again, we continue to demand an answer to "why" and to "where" when there will never be one. Our work is fruitless. Yet we continue with our calculations, our dusty marks on the green slate.

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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