By CJ Stobinski
Contributing Editor
In July 2015, my grandmother was diagnosed with stage four gallbladder cancer and was given nine months to live. She battled for her life until May 10, 2017, and lived mainly symptom free until the last month of her life, not even losing her hair during chemo. She saw another great-grand child come into this world, got to finally walk down the aisle at a grandchild’s wedding, and enjoyed another birthday and Christmas season, which she loved so much, that nobody but herself believed she would see. I read this at her funeral on May 16, 2017.
“I’ve gone back and forth since hugging my grandmother’s still warm body a week ago whether I should read this or not, but it’s been said nothing haunts us like the things we don’t say.”
I’m sorry for your loss. It’s this stupid thing we say to each other when someone dies and you can’t think of anything else to say. I’m sure more than one of you has said it today, maybe said it in this funeral home before. I’m sure I’ve even said it myself. It’s a way for us to retreat inward and protect our hearts from injury, from fully feeling something.
There’s a quote from my favorite movie (The United States of Leland) that’s stuck with me for over a decade: “I think there are two ways you can see the world. You can either see the sadness that’s behind everything, or you choose to keep it all out.” Another character says, “I recall when our lives were unusual and electric. When we burned with something close to fire, but now we sway to a different rhythm. Lives lived without meaning, or even directed hope. The passage of time measured only by loss. Loss of a job, loss of a minivan…a son.”
To me, a life measured by loss is one of the saddest existences imaginable, and my grandmother’s life will never be measured by loss. Humanity is so afraid of showing each other our hearts, of being vulnerable, raw. On October 11, 2014, I attended a funeral for my work manager’s husband. He was a master carpenter for the restaurant group and he renovated the restaurant I work at in February of 2012. They met, fell in love, and he proposed the summer before I started in 2013. Shortly after, he found he had stage four brain cancer. They got married despite everything and fought like hell. His showing was on their first wedding anniversary.
I sat through that funeral 11 days after learning that I was living with HIV, completely resistant to the idea of medication at the time, and wondered, what will people say about me at my funeral. The resounding voice in my head was, “Wow, this guy’s a DICK.” HIV forced me to examine my life, look in the mirror and see that it was anger, resentment, and bitterness I was carrying around from past childhood traumas which was slowly killing me on the inside, not HIV.
After I went on the news two years ago to advocate for People Living With HIV, my grandma reached out to me in my birthday card to make sure I was okay, all the while dealing with her first rounds of chemo. My grandmother was selfless. Her instinct was not to warn my younger sisters to not drink out of glasses after me as one immediate family member did. It was not to tell me I was sick for taking a single pill a day, as another family member did, a pill which gives me both a life expectancy of 70+ and an undetectable viral load I’ve maintained for over two years now, which brings the risk of transmission down to zero. Her instinct was to love without limits and expectations.
She once called me out of the blue. I was sitting on the floor of the dorm I lived in the year I went to college in Pennsylvania. I had decided to leave and not return so I could figure out my path to the person I exist as today. I hadn’t told anyone yet, but knew all the people who would look down upon me for leaving, for not living the life they expected me to live. I didn’t tell my grandma I was leaving, but she told me, “CJ, you can be whoever you want to be, whatever you do, I believe in you.” She had no idea how much that meant to me, how much it will always mean to me.
When I returned home, the person who needlessly warned my sisters told me I broke my mother’s heart by leaving school. It’s funny how we talk about people who live their lives to their own standards. When they’re alive, we call them hard-headed, stubborn, inappropriate, embarrassing even. When they’re dead, we say, “They did things their own way.” If we spent more time respecting that a path different from our own is not wrong, just different, maybe we could all coexist a little more peacefully.
In January, I traveled with Youth Across Borders to Honduras to a home for children living with and affected by HIV. Sixty percent of people with HIV in Central America live in Honduras, where 10% of children are born with HIV. Traveling to the second most impoverished country in the western hemisphere, naturally people asked, “What did you go to help them with?” But, you see, I went to Montaña de Luz, the Mountain of Light, next to the village of Nueva Esperanza, New Hope, to learn from the children and the people of Honduras who nurture their lives.
They taught me that money is not the only currency worth something in this world, that a smile, laughter, kindness, and looking someone in the eyes when you speak to them are worth their weight in gold and diamonds. Above all, they taught me that the one true universal language in this world is love.
They had this prayer in capilla every morning that I loved. I’m not much of a prayer, but whether you praise the Sun, the Moon, Vishnu, Allah, Jesus and his father Yahweh, or you oscillate towards The Big Electron, the core message is love: it doesn’t punish, it doesn’t reward, it just is. Anything further is a perversion. I like to say, “You can be certain you’ve created God in your own image when God hates all the same people you do.” My friend Emily would just say, “If it’s not LOVE, it’s a LIE. Emily 1:1” I still have some work to do obviously.
The children of Montaña de Luz prayed to Jesus Christos, who is really just the embodiment of love—love is above us (bring hands up above in an arch), love is below us (bring hands to shin-level in arch), love is in front of us (bring arms parallel to the ground in front), love is beside us (pull hands to torso and slide down), love is behind us (bring hands behind you almost parallel), and love is inside our hearts (bring hands up to your chest). Then repeat the hand motions.
My grandma was my favorite person in this world, because the only expectation she had when I was with her was that my heart was beating inside my chest. I didn’t see her very often in the last two years of her life, because frankly I’ve felt like a stranger when I’m around most of my family, that people are afraid to even speak to me, and it was easier to stay away.
When I got a great job finally not in a restaurant last year with Toledo/Lucas County CareNet, helping those less fortunate than me access life-saving health insurance, the two people I hoped would be grateful told me they didn’t believe my job should exist. My grandmother may have felt the same, but she just smiled and said “I’m happy for you CJ.”
It is said the single biggest regret people have on their deathbed is that they wished they had lived a life true to themselves, rather than the one expected of them. My grandma embodied this and wished to cultivate it wherever she went. She was never afraid to tell someone who thought “their shit did not stink” the truth.
I just finished a three-week program at a yoga studio where I’m certifying as a teacher this summer, and the first day I met a woman named Diana Patton. Just sitting in a circle with her I knew I was supposed to meet her. She asked us a question from her memoir, Inspiration In My Shoes. “Have you lived the best day of your life?” She added, “It’s when you decide that this life is your own, and you’re not something someone did to you, that you alone are responsible for your happiness.”
The next morning, I was meditating in the aerial hammocks at the studio, wrapped in a silk cocoon, looking up at what looked like wings reaching to the ceiling, and all I could think was, “Why would anyone choose to stay a caterpillar?”
Have you lived the best day of your life? Have you decided that this life is your own? Have you forgiven the people that hurt you? Have you forgiven the people who did not have the courage to apologize to you? Most importantly, have you forgiven yourself?
“I forgive you Chris (my mom’s husband), I forgive you Katie (my older sister), and Mom I forgive you, I’ll always forgive you.”
I know that my grandmother died with a satisfied mind. A week ago she decided to withdraw care and enter hospice. I got to the long-term care facility she’d been at for a few weeks just as the woman from hospice was talking about her morning transfer, and my grandma asked, “What now?” The worker said, “There’s a nice pond.” She was supposed to have five to seven days. Figuratively, my grandma said, “Fuck that shit, deuces wild bitches.”
I know this because the next morning I started my Mysore yoga practice at 5:30 A.M. with a prayer for peace for her, and I was stronger than I should have been on that mat. Right before I lay down in Shavasana, also known as Corpse Pose, I looked out the window and saw the sun was breaking through the clouds and I swear I heard her say, “You don’t need me to believe in you anymore, because now you believe in yourself.”
My mouth trembled with trepidation as I laid down to rest and I felt her peace wash over me. I was not surprised when my mom’s name appeared on my phone 20 minutes later, calling to tell me my grandma passed between 5:00 and 6:30 when I was practicing.
If you were at her 80th birthday party, she said that she was going to beat this, and if you told me you believed her I’d call you a liar, because I saw the look on all your faces, and knew the look on my own. Doris Jean Akens, Smith, and later Larrow proved us all wrong, and beat this in her own way, on her own time. She saw so much life beyond what was expected, but in the end, she knew the truth that scares us the most: that nothing and no one in this world is worth holding onto, not even one’s life. She knew that, eventually, it’s just time to let go.
I got her this giant amaryllis for Christmas 2015, what was expected to be her last. It’s first bloom was the new moon in April last month, and she passed on the full “flower” moon on May 10th in Scorpio, her sign, and that I find peace in.
So please, don’t tell me you’re “sorry for my loss.” I gained a 26-year lesson in how to be a badass, how to love without expectations, and ultimately, how to let go. Instead, tell me about the time she convinced the county snow plow to give her a ride home from the bar in a blizzard and fell out of the truck three sheets to the wind. Tell me about how many times she told you the same story about shitting her pants that she loved to tell so much. Or please, tell me how funny it was to watch me dance and karaoke at six years old to Clarence Carter’s “Strokin’” at Larrow’s Town & Country, the bar she owned. “Cue the music….just kidding.” Just be real, raw, authentic, show me your heart.
My grandmother’s life will never be measured by loss, but by the life, love, and support she gave unwaveringly.
To close, I’d like to read a quote from the book, The Painted Drum, by Louise Erdrich, that has given me strength over the past few years.
Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on Earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself, you tasted as many as you could.
For Doris Jean Larrow
November 7, 1935-May 10, 2017
Contributing Editor CJ Stobinski is an activist and advocate for the HIV community. He serves as a Youth Ambassador for Youth Across Borders, as well as Youth Ambassador for the social media campaign Rise Up To HIV. He has competed in races wearing the campaign’s No Shame About Being HIV+ tee shirt since May 2015. CJ is currently on his Undetectable=Untransmittable Racing Tour, educating people about undetectable viral loads, and bringing people’s knowledge of HIV into the 21st century. He is a Certified Community Health Worker in Toledo, Ohio, working as a Referral Assistant for the Northwest Ohio Pathways HUB, combating infant mortality and adult chronic health conditions. In his spare time, he loves to cook, play with his two fluffy cats, train for his upcoming triathlons, and is pursuing a yoga teacher certification.
Julene Tripp Weaver is the author of Truth Be Bold: Serenading Life & Death in the Age of AIDS (Finishing Line Press, 2017), No Father Can Save Her (Plain View Press, 2011), and Case Walking: An AIDS Case Manager Wails Her Blues (Finishing Line Press, 2017). Her poems have appeared in Anti-Heroin Chic, Riverbabble, River & South Review, Paddock Review, and The Seattle Review of Books. A psychotherapist, Weaver worked in AIDS services for over 21 years. Find more of her writing at www.julenetrippweaver.com.
Michael Broder is the author of Drug and Disease Free (Indolent Books, 2016) and This Life Now (A Midsummer Night’s Press, 2014), a finalist for the 2015 Lambda Literary Award for Gay Poetry. His poems have appeared in numerous journals and anthologies. He is the founder of the HIV Here & Now project, Indolent Books, and Indolent Arts Foundation. He lives in Brooklyn with his husband, the poet Jason Schneiderman, and a backyard colony of stray and feral cats.