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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Can You Do the Fandango?

Friday, June 20, 2014

Last night, I took my son to see Queen, the 70’s glam rock band once fronted by the iconic Freddie Mercury. Because my son is headed to Vermont next week to be a camp counselor and won’t be in Detroit for their local show in July, we traveled to Chicago to see them open their North American tour.

The trip to Chicago isn’t easy as I have lots of memories of Kevin in the city—from the times he visited me at Northwestern, and from the many trips we made while he was sick and receiving treatments in Evanston. I love the city. If it were more affordable, I would consider living there, despite the fact that the drive west on I94 is sometimes emotional.

Yesterday’s trip was laden with its own emotion, the result of being in this city and taking in this particular band’s concert. Most who know me know of my undying love for this rock group. It’s not always rational or understandable, and certainly wasn’t always easily understood by Kevin, who came to abide my love of Freddie Mercury, Brian May, Roger Taylor, and John Deacon. 

This was my eighth Queen concert (in one form or another), and the second one that I’ve shared with my son. I saw them first when I was only fourteen—too many years ago to count. Just barely a high school freshman, I attended with my two best friends, Sharon and Susan, who were twins. We told our parents we were spending the night at each other’s house and convinced my sister to drive us to the show and drop us off in downtown Detroit. I saw them five more times, and met them twice. Shortly after Freddie Mercury's death, Kevin and I saw guitarist Brian May while on a solo tour.

How do I explain my enduring love and fascination with this musical group except to say that they are a part of me, a part of my adolescence, my teen years, and my adulthood, woven into my life like threads of actual DNA. 

Together, Sharon, Susan, and I did all of the typical teen girl activities—we joined the fan club, collected magazines and pictures, hung posters on our bedroom walls and bought all their records. Memories of the band are connected to so many facets of my life. They were smart (four degrees and one PhD between them), good looking, and formidable musicians. And they were more. They quoted Tolkien and Shakespeare in their lengthy songs; they wrote about time travel, fairies, and other mythical creatures. It was rock music for geeky bookworms like me. It felt like home. The music, especially that sung by Freddie Mercury, was sexual in an androgynous way that I didn’t quite understand, but knew I liked. It was dangerous in a way that made us brave enough to lie to our parents about where we were. It was bigger than the four walls of our small houses and even smaller-minded schools. It was black nail polish (but only on one hand), costumes, song lyrics in Japanese. It was sensitive and rebellious. It was campy spectacle with a metal edge. It was loud and romantic and rhythmic and rock and roll.

By the time I finished high school, my tastes had changed and I had moved on to punk music and its slightly safer cousin new wave. My clothing, haircuts, and multiple piercings reflected this change. As Kevin and I began dating, my Queen records were dusty, but still maintained an important place in my collection. I often had to defend my love of the band as they fell out of favor. I continued to collect their records—some rare bootleg albums, both of Mercury’s solo efforts, Roger Taylor’s solo album, and even a signed copy of a very rare 45 cut by Freddie Mercury on the day he met the other members of the band and they became Queen. I didn't listen to the music nearly as much, and I completely lost touch with Sharon and Susan.

It wasn’t until ten years later, as news of Freddie Mercury’s imminent death became public, that I revisited my enduring affection for him and his music. By that time, I was married and eight months pregnant with the son I would later take to concerts. The memories, mixed with the hormones racing through my bulging body, put me into a deep funk. I cried for days at Freddie’s passing. I sat in front of MTV for hours, watching as fans lay flowers at Garden Lodge—Freddie’s home in London.

I believe it was the first time I took stock of what it meant to have a full life and to lose that life  senselessly and painfully. I mourned the too-early passing of this man and was utterly devastated by the way in which he died—the way in which AIDS took from him his voice, his sight, the very essence of his creativity. How awful I thought, to struggle so much at the end. I realized that he had filled his life so whole-heartedly while living, that he had lived many lifetimes in the span of his forty-five years. But of course, that’s no trade-off. He still left us too soon and was far too young. I thought a lot, in the months after his death, about what it means to leave a legacy, especially one of creativity; of dedication to craft, of choices we make. Conversely, I thought of regret, and how one’s life impacts those left behind.

On a family vacation to Switzerland in 2002, I made Kevin take a detour on our way from Zurich to Paris in order to stop at the bronze statue of Freddie in Montreux. I left roses at the statue and had a few photos taken. I thought about him again, about the significant impact he had on my life, and about this separate love I had that was somehow woven into my family life but was also a part of the me that existed separately from my husband and children.

In the years since Kevin’s passing, I’ve become fascinated with the stories of other widows, especially those in music. Contrary to belief, Freddie Mercury wasn’t gay, but was bi-sexual. He had a relationship with a woman named Mary Austin that lasted for many, many years, starting when the two were in their early twenties. She was his soul mate who stood beside him despite his many transgressions. She is the executor of his estate, maintains Garden Lodge today, and is the only person who knows the whereabouts of Freddie’s remains (which he did not want to ever be made public). She has taken abuse over the years because she maintains her position to the chagrin of many who have tried to lay claim to some part of Freddie’s legacy. I admire her strength and the love the two shared. She is, absolutely, his widow.

It was with a certain amount of ambivalence though, that I purchased tickets to last night’s show. They are touring with American Idol Adam Lambert, who sounds like Freddie, but who seems to me to be lacking in style. John Deacon has retired from music and refuses to even be seen with Brian May and Roger Taylor. So it was just those two—a bit wider in girth and grayer of hair—that performed last night, along with anonymous back-up musicians. 

Despite the second thoughts, it only took the first beats of the bass to put me right back at the very first concert. I stomped my feet, I screamed, I danced, I shouted their names. There is something about feeling the beat of that very loud music tingle the bottoms of my feet, pierce the tip of my spine, and travel upward and outward through my body that makes me feel alive in a way that nothing else can. The campy spectacle and over-indulgent light show was back! The show included a few nods to Freddie, including film of him from old concerts. I couldn’t watch without tearing up—for the lost loves in my life, including him, and for the never slowing passage of time.

It was a joy to be there with my son, to see him enjoying the music too and to see him mouthing the words to the songs. I’m not certain what my legacy will be, but if just a tiny part of it is that I passed along the love of this music, then I think I’m ok with that.

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