COLLECTIVE GRIEF REJOICING: My Annual Day of the Dead Party

Dia de Muertos has been my favorite holiday since 1995, the first year I lived in Mexico. I was there on a one year pre-dissertation fellowship from the Social Science Research Council. Mexican friends in Cuernavaca invited me to visit the small village of Ocotepec to witness a traditional celebration of this welcoming home of departed ancestors. Perhaps because I had already experienced much loss in my young life, I was eternally moved by the simplicity and sincerity of the Dia de Muertos traditions. We walked from house to house, small cinder block structures, the mood mostly serene and contemplative. In each, an entire room of the house would have been cleared of furniture. An elaborate altar (ofrenda) would dominate the room, adorned with marigolds (cempasuchil), red cockscomb (terciopelos), candles, colorful sugar skulls and skeletons (calaveras), sweet breads (pan de muerto), and tissue paper banners (papel picado). Photos of the person who had died in the previous year. Piles of fresh fruit. Clay pots (cazuelas) full of their favorite moles and other foods. Offerings of their particular ‘vices’ such as cartons of cigarettes and bottles of tequila. Metal folding chairs would line the other walls of the room for people to sit and reflect, share stories and occasional laughter, offer prayers, and partake of some bit of food prepared for guests and being served from a table in one corner of the room. A warming cup of chocolate atole (champurrado). A couple of tamales or quesadillas. It was a celebration of life and a gesture of reverence for family and community.

Eighteen years ago I started my annual Dia de Muertos party as a simple thank you to the generous colleagues who took turns driving me to treatment. I was in the first year of a tenure-track appointment at a small liberal arts college in central Virginia when I was diagnosed with cervical cancer. I had been sick for months and was finally diagnosed in June 1999. I had surgery at the end of that month and eight weeks later had recovered enough to begin concurrent rounds of radiation and chemotherapy. My then-husband was teaching at a college in North Carolina, so I was on my own during weekdays. When I told a colleague in the geography department that I had opted to do my post-surgery treatment at a teaching hospital in Richmond, an hour away from the small town where we lived, she balked at my plan to drive myself. Erin insisted on coordinating a pool of drivers for me. Each Monday through Thursday a different colleague arrived at my house to shepherd me to and from the hospital. Steve even brought a brown paper bag with bagel and orange juice, without fail, in an effort to coax me to eat something. We talked or didn’t talk. Mostly I slept. I barely knew these people, and I was moved beyond words at their kindness and generosity. Other new colleagues stopped by with food, flowers from their gardens, attempts at normal conversation, and various gestures of solidarity.

Thanks to Julie I was granted a medical leave; she was a grad school friend who came from Pennsylvania to help me at the start of the fall semester and was so alarmed by my sorry state of health she consulted with my chair and dean. I could devote myself entirely to the treatment process and would not have to teach while dealing with the worst side effects of radiation and chemotherapy. As the weeks wore on and my body wore down, I could not wait for the treatment to end. I begged my doctors not to make me endure another weekend in hospital quarantine for my last round of internal radiation. My 31st birthday was coming up and I argued that I should be allowed to finish treatment before that date. They consulted each other and agreed that they had ‘hit me hard enough’ and that a third round of internal radiation would not likely make a difference in my chances for survival.

When my husband picked me up from the hospital and asked me if I wanted to do anything special to celebrate, I said through tears “I just want to see the ocean.” He did not hesitate. Took the ramp onto 64 heading east and drove me to Virginia Beach. That afternoon of staring at the sea marked the beginning of my lengthy healing journey. I vowed to do something to mark the end of my treatment and to express the vastness of my gratitude to the new friends who had held me up over the previous weeks of hell.

During my annual Dia de Muertos party, I acknowledge the closeness of death and embrace the reality of pain and loss. I long to feel connected to the people I have lost. I rejoice in the raw vitality of life, the beauty of love and laughter and music and dancing. I love to cook for and feed others. I respect the constant interplay between life and death, the way they inform and reinforce each other. All of these feelings became far more intensified during the depths of my illness and the journey through recovery.

Ending my treatment in early October was perfect timing to combine my favorite holiday with a thank you party for my friends and community. I was exhausted by the treatment and still dealing with side effects, as I would be for years. But I spent what time I could the next few weeks lovingly preparing a feast of homemade dishes to share with my caregivers. I wrote a letter to each guest explaining the significance of the holiday and inviting them to join me in celebrating it as well as them and our little community. I called it my Dia de Muertos “F*ck Cancer” Party. I urged people to bring photos and other remembrances of their loved ones to place on my altar. I welcomed symbolic efforts at ‘f*cking’ cancer and other things that had taken our loved ones. The party was not at all a declaration of triumph. I had no idea if I would live another six months or several years. I could not have imagined the time with which I have been graced. I would never feel comfortable claiming to have ‘beaten’ cancer. But I would say ‘f*ck it’ every damn day, even if it eventually killed me.  I continue to do so, every damn day.

The party became an annual tradition. The guest list expanded. The list of diseases and social ills to ‘f*ck’ proliferated. When my mother died from pancreatic cancer and my marriage dissolved, I put up separate altars. One for my dear mother. One for my failed marriage. When I moved to Richmond, I continued to invite friends from Fredericksburg. Over the years, more friends in Richmond joined the festivities. Mark, my partner of nearly nine years and I have forged new traditions of preparing together elaborate Mexican dishes from scratch. For the ten year anniversary of the end of my treatment, Mark and I had a friend make custom t-shirts as a surprise gift for each guest. Soon after we bought our house, Mark came up with the brilliant idea of using crock pots to keep things warm so that we were not hovering over the stove the whole party. Now we can actually enjoy the company of our guests. And we have more crockpots than anyone I know. Each year new faces appear, at the party and on the altar. Friends and family, some of whom attended the party in years past, have passed on and are represented by new photos on the altar. I have been told many times over how important and meaningful this party has become to the people who attend regularly. A couple of years we took a break because one new grief or another made preparations too much to bear. One year after the death of a dear friend, we hosted a small dinner party with her husband and six close friends in lieu of the larger event. My friend Michele, who I met in 2013 and was the first person I met who had also had cervical cancer, flew down from Boston two years in a row to help with preparations and share in the celebration. This year, the first since getting married last July, Mark and I scaled the guest list way back because having over one hundred people crowd into our small bungalow had become too daunting. I will continue to throw some version of this party, when I can, for as long as I am here.

In June 2017 I attended Cervivor School in Florida. It was a beautiful yet somewhat otherworldly experience. Having spent so many years of my recovery without the company of others suffering the same dread disease, I marveled at the cathartic and supportive experience Cervivor was crafting for each attendee. My heart was filled to bursting as I listened to the stories of other Cervivors and observed their transformation into informed and empowered advocates. I cannot understate how impressed I was by the entire Cervivor organization. Myself, I felt a little bit on the fringe (not unusual for me) because my own treatment was so many years out. I could not plug into the immediacy of the suffering as easily as I once did. I have spent so much time and so much of my heart and soul fighting for my own survival and finding a peaceful place in which to rest my soul. I found myself imagining how different those years might have been if I’d had the solidarity of this group of magnificent people to share the journey. I was completely won over and have enthusiastically embraced the role of Cervivor advocate. I have dedicated myself to become one of the faces of Cervivor in the Richmond community, to invite other people into the Cervivor fold, to educate and care for others suffering a cervical cancer diagnosis.

This past year, two gorgeous souls appeared on my altar. Lisa and Jillian, too young Cervivor sisters, who passed away. Having them front and center on the altar prompted several explicit conversations about cervical cancer, conversations that do not typically happen at my party. I was moved by the questions people asked me about Lisa and Jillian and even my own long ago (but never far away) experience. One of my friends reported the difficulty she has had convincing her son’s doctor to give him the HPV vaccine. Another friend talked about her own abnormal pap years ago. My connection to Cervivor will definitely transform this celebration, as it has transformed my own sense of myself as a health advocate.

F*ck Cancer.

¡Viva la Vida!

Read Traci’s Cervivor story here.

Because I love her.

The conversation had started off as well as these things normally do. I was standing in my studio getting ready to work on some new music when she called.  We said our hellos and asked each other what the other one was doing. Then she paused a moment and breathed hesitantly, yet with a firmness of practiced thought and review.

“Before we go any further, you need to know. I have cancer.”

As I’ve come to know over time and experience in being part of the caregiver community; no one fully knows what their reaction will be. There is the conscious utterance of sorrow, shock, and surprise. Yet in the subconscious, an obfuscation of thoughts and emotions spill without measure throughout the very fibers of your being. Fear and ignorance of the details of the situation that you’re now facing, no matter how grand or subtle, eats away at the very thing that you hold dear with that person.  The very love and hope that you’ve invested towards them, is compromised; in ways that are completely and thoroughly incomprehensible to you as you stare in the incredible gravity of those words they just spoke.

As I’ve also learned in being part of this community now; the fear, uncertainty, ignorance and misunderstanding; has caused many to walk away from their loved ones. I’ve been told stories about how so many husbands have walked away from their spouses, children have blamed their mothers, and communities have shunned them in whispered rumor and judgement stricken with the narrow doctrines of puritanical ideologues.  These women who have become victims of cervical cancer and other HPV related diseases were now the sorority of Holly Lawson. This beautiful and vibrant woman whom I just had met for a date at some innocuous local pet store and had a small dinner date with at Fuzzy’s Tacos only days beforehand, was suddenly telling me that she was now stricken with a disease that I had only passing awareness of. This woman that made me laugh and smile like no other, was now entwined within a somber embrace to a vessel of suffering that humbles all who linger in its shadow that does not fade.

Holly was scared, though she held it well. If one only glanced she appeared mostly unaffected in passing. Yet I know fear. I know death. I know suffering. I know despair. She could not hide it from me.

“Oh my God. I’m so sorry…”

“If you don’t want to meet me anymore I…..”

“When can I see you? Can I come over later tonight, well it is getting late. How about tomorrow?”

“Wait. Didn’t you hear what I said?”

“Yes, I did. So when can I see you?”

“Aren’t you afraid or something? I mean, I just told you…”

“Yes I am, but I am not going to give up a chance on love because of this. Well just see where this goes, we’ve only been on one date so far, well technically 352 dates already…. Besides, I know this great taco shop called Rusty…”

That was our first real conversation. From there I watched in awe as she battled every day an enemy that I could not kill.  I waited with her as she lingered between states of consciousness and awareness in almost every area of her hospital and various clinics.  I held her hands as she trembled from infections that caused mortal pain.  I looked on in absolute shock and sadness as she bore the Frankenstein like scars on her body of what the doctors had to do her physically, to keep her alive.  I held her as she cried, awash in depression, anger, fear, hate, and confusion at her own family and friends who were not there with her and did not appear nor could they truly understand what she was living through, and the battles that she won and lost in a war for everything she was. I watched as cancer broke her and everything that she held onto from a previous life — that seemed so distant and blurred with fondly recalled memories; seemingly fading a little more with each passing day where she lingered in its suffocating shadow. I watched Holly survive.

“Before we go any further, you should know; I have cancer.” 

That sticks with me every day. Cancer is not something that goes away just because you have gotten some sort of treatment.  It lingers in your thoughts, it colors the sky teal, it fuels contempt at the world, it makes you smile with your arms linked a fraternity of those caregivers who stayed — who want nothing more than to comfort and ease the wounds and scars inflicted upon the women they love so desperately by a villain that they cannot kill.

As a man, I have found that being a man is much harder than it appears by birth-rights. Charging into a fire, running towards gunfire and putting your physical life on the line does not ultimately make you a man. Nor does it really make you courageous and worthy of praise.  That is because when one finds themselves in the moment of fight or flight, you either do or do not.  The try part is left to the others who endeavor to make sense of the ways which you have to make that decision in the first place. In my opinion, being a man is standing there with the woman you claim to love and care for, and help her walk down a linoleum hallway in the middle of the night with the stench of chlorine and sterility holding her hand as she struggles to stay conscious and upright. It’s holding the catheter bag filled with despair and fragile hope. Being a man is running to every CVS, Walgreens and 7-Eleven trying to find a back scratcher for her to use on her legs as she cannot bend down to reach them while she lies between fits of incredible pain to dimly coherent conversations laced with the morphine that eases some of the suffering. Being a man is staying awake all night to rub her back as gently as possible, so that she may rest for even just a moment; knowing full well that your workday is going to be pure hell after driving at least an hour one way just to get here on time. I’ve discovered that many men have not done this. They walked away. They have left the mother of their children and their partners of some years because she has suffered a blow to her very existence. A man does not harm his partner and does not leave her side because she is suffering through something that she did not cause.

Holly did not invite her fate, she was a victim of life, as we all are. If I could not give her a chance, give myself a chance, and give love a chance; then everything that I’ve ever stood for and have ever believed and have fought for is truly worthless.  It means that ultimately, I do not care about love. It means that truly, I cannot love. However, as we all want love, so do I. Because of Holly, I believe in love and the absolution of what that means.  I believe in love, not because of some mythical story of dragons or starry-eyed fairytale of gowns, but because I believe in what is right and good about this world and our place in it and to me that means that you have to believe in it for its very sake; not because someone told you to do so. From what I’ve seen in life, this is not really taught to anyone in ways that they can truly embrace unless they have experienced it for themselves. So, in the end, the very thing that keeps me; is that I truly believe in love.

I believe in what Holly is. The same woman that made me laugh and smile; and think; and fuss and curse — and all of it. I believe in life again and all of the beautiful and horrible things that it brings us. Not because I was told to. But because I met Holly. When she survived, so did I. Why?

Because I love her.

Addendum

“Before we go any further, I have to tell you something. I have cancer again, it came back.”

“Really? F***. Ok. Let’s go to Fuzzy’s… I kinda want to try that new burrito bowl. It doesn’t look like the one from Chipotle, but hey let’s try it anyway, we should get nachos too…. The pork ones.  It’s going to be a long day between Dr. V’s office and the cancer center. Hey, hold on let me get the door… there you go, the seat belt is back a little far so I don’t want you to stretch too far, you’re still in your belly.”

I kissed her gently as she sat in my car.

“I love you, Holly. Everything is going to be alright.”

Check out Holly’s story here:  www.cervivor.org/holly

Claude Swain is a writer, actor, and musician who hails from Rocky Mount, Virginia and now resides in the Dallas-Fort Worth area, with Holly and their fur baby, Luna. He is a Marine Corp combat veteran and attended Virginia Tech. Claude has played in the Richmond Symphony and is an active part of the Dallas music and arts scene. He is a wine enthusiast and cigar aficionado, who has never met a taco he didn’t like. He is currently the Sr. Site Development Manager for Tillman Infrastructure in Carrollton, Texas.