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.

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 seventh 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 at Cobo Hall in downtown Detroit. I saw them four 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 beautiful 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 ear piercings reflected this change. As Kevin and I began dating, my Queen records were dusty, but still maintained an important place in my collection. But they had been set aside for newer albums by The Clash, Patti Smith, the Talking Heads and Elvis Costello. 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. I also lost touch with Sharon and Susan as our lives took different paths.

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 mourned for the time of my life when my friends and I were happy and mostly carefree, and for the fact that I wanted nothing more than to find them to share these moments.

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. As we drove away and I looked back through the window of our rented car, I thought about trajectories. How lucky I felt that my path crossed his, if even for a few moments. But also regret that my life had not been a part of his to the extent that my teenage self had wished so hard it would be.

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 all the loves in my life, including childhood best friends, Freddie, Kevin; 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.

I’ve been thinking about music for a few reasons lately. I recently spoke to a colleague about working on a music book project this summer. I’m terribly excited by the prospect. The book has to do with widowhood, so it feels perfect in many ways. I’ve also been reading Facebook posts by friends who share the “top 10 albums that have stayed with you over the years.” I don’t think I could narrow it to ten, but I’m thinking and trying.

Then I had a conversation with another friend about the music of our childhoods, during which we discovered a mutual love of Neil Diamond that comes from the fact that our parents loved and played Diamond’s music when we were young. Like the memory of cruising to the zoo, I can put on Diamond’s Holly Holy or Cracklin’ Rose and, with the first strums of the guitar, I’m immediately taken back to springtime Saturday mornings, doing chores while these records played on the turntable that was built into a stereo cabinet the size of a VW bus that occupied most of our living room. The windows were cranked open to let fresh air in and the volume was cranked up as loudly as my mother felt was respectable. 

Having now lost my mom just over a year ago, I’m also reminded of the several times that my sister and I took her to see Neil perform in concert. Mom worked on an assembly line for GM, cutting and sewing the fabric that would become car interiors. She worked forty-plus-hour-weeks and then worked another several hours each night with household duties. We always had a full meal for dinner (which we always ate together), and the house was pristine. My memories of Mom at those concerts, standing with us, swaying to the music, her arms raised in the air, are now some of the few times I really remember her feeling and acting carefree. They are powerful memories that sustain, and that come back to me readily after the first notes.

Oliver Sacks’ fascinating book Musicophelia, and Daniel Levitan’s equally interesting Your Brain on Music, both address the idea of music from a neurological perspective, including how we remember music, from individual notes to complete symphonies. For me, music is so closely tied to memories that—with older songs especially—the two seem intertwined in my brain. That has certainly been the case where music and memories of Kevin are concerned. I can’t consider our meeting, dating, marriage, or the time of his illness without also thinking of the music we shared.

We first connected over our mutual interest in the Clash. He borrowed albums I had purchased from the import bin at Dearborn Music and told me about going to their concert at a high school gym in Grand Rapids. When we moved in together a year later, the amount of duplication in our record collection spoke of two people with very similar tastes. They differed at some points, and Kevin quickly learned to accommodate my enduring love of the music of Queen and other 70’s rock bands that he had come to disdain. We also attended concerts together, some twenty or so over the years: everyone from Echo and the Bunnymen, to the Rolling Stones, to David Bowie, U2, and Bob Dylan. We made mix tapes for each other and for our kids—the first one for our son made while he was still in utero. We hung out at record stores like Schoolkids and Wazoo. We visited Johnny Cash’s grave and the bronze statue memorial to Freddie Mercury in Montreaux, Switzerland. We named our first puppy Mustang Sally.

So when Kevin was diagnosed with cancer and had to undergo treatment, it wasn’t surprising that music was part of that as well. At first, he made his own mix lists on his iPod, some songs soothing, some closer to battle cries. The radiology technicians plugged his iPod into their speaker system while he lay on the table bolted in under plastic mesh, and he put his headphones on as soon as he walked into the chemotherapy room. For round two, he solicited music from the many friends who read his carepages blog, agreeing to add anything that was suggested, even country songs and rap. The suggestions poured in and the list--over 200 songs which are still on our iTunes program--include Wonderful World by Louis Armstrong, Bill Withers’ Lean on Me, Mama Said Knock You Out by LL Cool J, a very fast version of Amazing Grace by the Dropkick Murphys, and Beethoven’s Symphony #3 in E Flat, Op.55, Eroica.

Kevin absolutely loved this list. It connected him to everyone that was out there supporting him during his worst days. The music cheered him, strengthened him, calmed him, and gave him nourishment as certainly as any food. He listened to these songs as the anesthesia took effect before his two spinal cord surgeries. He spent forty-five days in the hospital before his last two weeks at home. Every night, the last thing I did before leaving for home, or curling up on the chair next to him if I could stay overnight, was to put his earphones on and turn the iPod to “Chemo List #2.” The drugs knocked him out each night, but the music allowed him to sleep.

He told me that he had two favorites on the list: Dylan’s Ring Them Bells and Three Dog Night’s Shambalah. It was the closest thing we had to time spent planning a memorial service—I took that conversation as an indication that he wanted those songs played in remembrance. They were, along with several others. It was a music-filled service, as he would have wanted.

Of course I could not listen to this playlist, or even one or two of the songs on it, for the past three years. It’s still difficult to listen to Ring Them Bells or Shambala or Wonderful Life or Joe Strummer’s version of Redemption Song. I wondered sometimes, if those songs were lost to me forever, their tunes and words just too painful to have in my life. I knew my relationship to music was forever changed. I wasn’t sure how I felt about that. So much of what we shared is just all around me, waiting for me to deal with on my own without any choice. But songs can be turned off or avoided altogether. It has taken some time, but I'm gradually putting the headphones back on and making music a part of my everyday.

I've managed, I suppose, to come to a different place. Now, when "Kevin songs" pop up on my random playlist, I simply let the tears come and embrace the time as a few minutes that I can spend in the comfort of memories. 

And I know that the memories will always come along with the music. Someday I’ll put the music on and dance, but for now it’s ok to just sit and listen.