First published in But You Don't Look Sick: The Real Life Adventures of Fibro Bitches, Lupus Warriors, and Other Superheroes Battling Invisible Illness. Indie Blu(e) Press. November 2021
“Bring your raincoat,” I said to Jade.
My daughter was finishing up her morning routine: brushing her teeth, pulling her new braids back into a ponytail and laying her edges. The familiar smell of coconut oil meant she was almost ready to go. I heard the squeaky door on the shoe closet open and looked over. She reached past her Nikes to grab her Adidas, then remembered the field trip and pulled on her boots instead.
Today started especially rainy. A dense petrichor filled the room as we opened the front door, quickly overtaking the pleasant coconut smell. It was going to be a very wet, muddy day. I was hoping those black leather boots were going to keep her feet dry.
Raincoats are not cool in Seattle- they’re a sure sign that you’re not from here and only just better than an umbrella, something a local would never use. Hoodies are okay, but not ones made out of nylon or rayon or polyester blends. The sound those fabrics make as your arms glide effortlessly past your sides is like a not-so-subtle reminder that you do not belong. Still, I knew we’d be outside all day, and I also knew Jade wouldn’t want her braids to get messed up. Protecting the hair won out and the purple rain jacket went on.
The first time Jade had asked me to chaperone a field trip, she gave me clear instructions: don’t be weird. Because I’m one of those dads, she knew it was important to lay down a few additional rules:
1) Be friendly, but no funny stories about when she was a baby.
2) Dad jokes are strictly off limits.
3) I may not pick her up at any point unless asked.
4) The field trip is not about me.
I felt confident based on her feedback from the last field trip, after which she simply stated: “thanks for not being too weird.” Still, it felt a bit like walking a tightrope, and I was starting off a bit unbalanced, having insisted on the raincoat.
Earlier that morning, I had gotten up to make breakfast for her and the boys, as I do every day. Jade likes a toasted English Muffin with a fried egg where the yolk is just soft enough to run, but hard enough to not drip all over her hands and nails. Noah always has oatmeal and Jaylen has eggs with toast. My meds are to be taken with a meal of at least 450 calories, so I make myself two eggs and toast with a slice of turkey. I wash down my antiretrovirals with coffee and a chaser of probiotics and vitamins with a protein shake.
I worried a bit about the cold weather and the dozens of kids who awaited me, with their inevitable sniffles and coughs. Having convinced Jade to wear a raincoat, I felt okay wearing mine. Not weird. I practiced fist bumps instead of high fives, because it felt a bit safer, like I was less likely to get a hand full of snot or germs that way. I was feeling good, though, and my immune system was strong.
When I first got my HIV diagnosis, Jade was just two years old. It was unexpected; I had survived years of animated urban gay life before marriage and kids, and managed to avoid the plague that had killed so many of my contemporaries. I was so careful at this point in my life, so calculated about my risks.
I was overwhelmed by feelings of shame and guilt, and allowed taking care of the person whose HIV had been shared with me to distract me. Late night phone calls overflowing with his emotions and tears were an easy way for me to avoid my own feelings, and also allowed me to shift to an easy default for me: being helpful. Having buried so many friends with HIV and AIDS, I was not clear how my life should continue, but I didn’t want to think about it. I acted as if my illness was invisible, allowed the rainy grey skies of Seattle to soak deep into my bones like a local, convinced that the way to still fit in was to pretend like I was unaffected.
I hoped that I would somehow be unaffected.
I worried about getting sick, but I worried more about my kids finding out I was sick. I worried about dying, but also convinced myself that confronting my sickness by going on meds was too risky. I didn’t want my kids to find my pills and worry about me. I didn’t want them to think I was going to die.
Hope is fickle, though, and my body called my bluff, said it couldn’t fight on its own anymore. It forced me to make some hard choices and start dealing with my illness, to accept that I couldn’t pretend everything was okay, even if my illness was not obvious to others.
Which doesn’t mean I like the smell or taste of the meds, even years later, any more than I like the smell or feel of nylon rain jackets. And it doesn’t mean that I like the sound of my hand clicking open the top of my bottle of antiretrovirals, any more than I like the sound of my arms gliding effortlessly against my waist in my raincoat. And it doesn’t mean that dealing with my illness makes me feel any less like an outsider than how I feel walking around in a raincoat on a wet Seattle morning.
But it does mean that I can focus my energies, at least for now, on a different hope: to not be weird, or at least not too weird for my daughter to spend time with me. Because even though I’m that kind of sick, I’m also still that kind of dad. And not being weird still takes a lot of hope, and a lot of effort.
First published in Snapdragon: A Journal of Art and Healing, The Grief Series: Anger. Issue 7.2, Summer 2021.
"You're a pretty big wheel, ain’t you?" my grandfather asks.
I watch as he adjusts his massive frame in the green armchair and realize I’m all alone with him in the dark front room of their Appalachian home. We’d driven twelve hours to come see them in our maroon Oldsmobile Custom Cruiser, my mother’s travel games keeping us three kids somewhat occupied along with the rotation of who got to sit in the rear jump seat that faced backwards. In later years, we’d take I-64 through West Virginia, but on this trip, we traveled across our home state of Virginia on I-81 to the mountains of Kentucky. Our first stop was the Tastee-Freeze outside of Emporia for an ice cream.
Even before we arrive, I can smell the biscuits my grandmother will be baking in the kitchen, and begin to imagine the way they’ll slowly melt into a delicious buttery paste in my mouth. As we slowly drive up the hill to their small home, I catch my grandmother extinguishing her cigarette on the concrete stairs and throw it in the yard. She fixes her hair and waves us in. “Biscuits are almost ready- come get you something to eat,” she says. Along with the biscuits, she’s prepared sausage patties, homemade jam cake and fudge.
While the rest of the family gets started on the food, I find myself in the front room, staring at my grandfather’s strong hands. He lost three fingers in a trucking accident, but I know his thick hands are still strong enough to knock me over. His feet are firmly planted in his black work boots and it feels like we’re playing an impromptu game of catch as he pitches those words at me: “well? You’re a pretty big wheel, ain’t you?”
Maybe it’s my dad's fault, I think. Surely, it’s my dad’s fault. Mom has told me it’s my dad’s fault. Mom uses heavy, sticky words like her father. Words with heft.
My grandfather was puzzled, concerned that I would become nothing like the men he knew: strong, dominant brutes with calloused hands whose days were spent underground in the dark coal mines of Kentucky, where the beauty of my grandfather’s otherworldly ice blue eyes went mercifully unnoticed. The men he knew lived in perpetual darkness, entering the mines in the morning before dawn and exiting at dusk, the blackness seeping into their lungs, slowly robbing them of air. These men didn’t waste their breath on unnecessary words.
My mom has shared stories of the residue my grandfather carried home with him, soot covered clothes and a darkness that took over more than just his lungs. She’s told of how drinking seemed to make things better for him until it made things worse, something else to guide him away from the light while slowly, silently leaching oxygen from his blood. She’s spoken of her own asthma, and of how she knew not to ask about the black residue his hands would leave when he grabbed my grandmother’s arm or closed his hands around my grandmother’s neck as she, too, gasped for air. Everyone was suffocating in that house.
My grandfather stares at me from that dark corner, his green work pants barely distinguishable from the color of the fabric on the chair, his jowls steady and his thick hands clenched, waiting for a response.
When it came to choosing my dad, my mother selected a man who relishes the light. His sensitive hazel eyes are perpetually watery from being outside. His hands are soft, in spite of years of janitorial work before he joined the military, soft from working retail and the brief time he taught high school history. Violence for him is an intellectual exercise more than a hands-on activity, his military service spent on war games at sea or co-piloting an A-6 Intruder as the bombardier-navigator, miles away from the impact of his strikes. Like me, he’s dyslexic and emotional, and his words are often assembled in unconventional ways, too plentiful to be heavy or sharp. Unlike my grandfather, he does not pitch his words like a baseball. Instead, they spew like a steady barrage of unexpected ping pong balls that, while irritating if beamed in your direction, are never dense enough to leave a scar or sting when they hit you.
The heavy sticky words my grandfather threw, on the other hand (the ones my mother learned to use, as well), I caught them all in my small, soft hands. I knew I was not allowed to let them fall or throw them back. And as I aged, I had to learn where to place them. Some in my heart. Some in my head. Some, I realized, I was supposed to hold like a hammer or pickaxe, ready to use to strike or swing. With others I was supposed to feel their burn like flares from a stick of dynamite until my hands, too, became calloused. Soft hands are of no use to a man.
I stare at my grandfather awkwardly, waiting for direction, trying to figure out what to do with his words. My mother isn’t in the room but also deeply present. Did my siblings leave me any biscuits?, I wonder. I respond to him like my father would. “I guess I am, Grandpa. I guess I am a pretty big wheel” and start to walk away. He glares at me, angry, those blue eyes glowing in the dark corner of the room making it clear I’m not excused. He raises his strong, thick hand like he’s going to strike me. Watches me to see if I flinch. Waits for me to retreat. Waits for me to fall. He reaches out, squeezes my shoulder hard, and expels a deep disappointed sigh (my mother learned that from him, as well). I escape to the kitchen.
Years, later, I wonder if he’d be proud that his words hit hard enough and his darkness lingered long enough in my lungs for them to take root. And while I may just be the “pretty big wheel” he foresaw: a little too obvious, a little too showy, a little too gay, I am also his daughter’s angry, dark son. Like my own dad, I may be a little too soft, but I am not drawn to the light as easily as he is. And now that I am a father, I am also a miner like my grandfather- digging away at the darkness he planted, fighting to keep my airwaves clear, seeking to make a path for the light my dad relishes and terrified of the residue my own calloused hands could leave on my own kids and everything I touch.
First published in Chaleur Magazine. March 2, 2019
Republished in Day Without Art 30. Pandemonium Press. December 2019.
Republished by fresh.ink. January 13, 2021
The night you called me, I was sitting in my car in Chicago at a light on the corner where Western and Diversey and Elston meet, a six way intersection with so many confusing directions as three roads cross. I was heading home- not to the place where you lived with me, not to the home we had made together, but to a new place a block away. I sat through two lights while we talked, and only moved after those words: “I love you.”
I was 26 when we met as part of a back to work program for people living with HIV. You were funny and kind and broken, and the world was scurrying around, trying to pick you up and put you back together. Pharmaceuticals had suddenly taken you from death’s door, back to life. But so much of you had already died. In the midst of the retraining program, you lost your job and then your apartment.
“Move in with me,” I said, thinking that I, like the meds, could somehow help you live again. When we’d get up in the mornings, I often watched you standing in the mirror, watched you watch yourself.
“I look skinny,” you’d say, but I would catch you running your hands over your arms and chest, like a man going through puberty again.
Was it too much to watch your body come back to life? Were the joyful hugs celebrating your renewed health suffocating? This body that had wasted away was taunting you with renewal, just when you had made peace with letting go. You’d spend days snuggled up with my dog in our house, and evenings in your room. Eventually, you returned to Seattle. We would talk on the phone at night. I could tell you started using again.
I wanted you to hang on. Correction: I wanted to hang on to you. Correction: I couldn’t let you go.
I started looking at jobs in Seattle. I didn’t know it then, but you had already started your goodbye tour. Seattle was your first stop to see your ex wife. Then, you went to Idaho to see your brother.
I thought I could save you. I thought I could help you live again. I thought I would have more days of watching you, more days of snuggling with the dog on the sofa.
Just like when you moved in with me in Chicago, though, you didn’t need someone to help you live. You needed someone to help you die. To be your witness. And none of us were strong enough to do that, which is ironic, since we’d all been watching you slowly die for years, but refused to see it.
I learned about it early the next morning, after our phone call, when your brother found your phone and called the last few numbers you had dialed. Our conversation the night before was short, and in spite of (or maybe because of) it ending with you telling me, “I love you,” it still felt unresolved. So when I saw your number on my phone, I was eager to pick up.
“Who is this?” the voice asked. We talked for a minute; I told him who I was, and I discovered the voice belonged to your brother. Then he told me you were dead.
“I’m sorry for your loss,” my words stumbled out. “I know he’s been really grateful for the way you’ve been taking care of him.”
He didn’t say that you died by suicide, but it was clear to me that’s what had happened. His questions turned to accusations. I felt like a kid playing dodgeball and everything he said was smacking me, every throw was making contact: in the face, in the shoulder, in the leg, in the chest. No matter how I moved I couldn’t escape his words.
I’ve contemplated on more than one occasion that maybe you’re still alive, and maybe this was your brother’s way of protecting you, helping you in a moment of sobriety. Maybe this was just one more attempt to help you cut ties with a community that gave you life and also fed your decay. Being angry was perhaps easier than being left alone to grieve the death of a man we all knew was going to die. A man we all knew was ready to die. A man we all knew was waiting to die. Maybe your brother didn’t have room to hurt, or maybe he was just tired of hurting, and welcomed the inevitable end, so that he could move on with his life.
I thought about my uncles Billy Ray and Michael whose deaths seemed to affect no one but my grandmother, because when an addict finally meets their end, those of us left behind are often too worn down to feel. I thought about how painful it was to watch her grieve in isolation, and about the strange pressure to not react, as if those of us who stood by and watched their steady descent made some kind of secret pact to stop caring, or an agreement that we had to deny their humanity with each act of violence they undertook against their mother, their wives, their kids, and ultimately themselves. Maybe your brother was too tired to feel, or maybe watching your body come back to life was too much for him to take, as well.
“I love you,” you said to me that night on the phone, and I started moving again. Did I say it enough? “I love you, too.”
First published in Soliloquies Anthology 23.2. Apr 27, 2019
Just look for the blue Dodge Durango with the Guam sticker, she said.
It’s June 19, 2012. The following day marks the three year anniversary of meeting Jaylen, our eldest son, at a playground in Tacoma. Today, though, Adam and I are driving to Ellensburg from Seattle to meet Noah. And I’m not doing well.
We had barely talked with his aunt, other than to make arrangements to pick him up, and to hear how caring for him and her own four kids was just no longer possible. How she was sorry. How there was no one else. How it had to be now. How she couldn't wait any longer and her husband's family was away. How much pressure she felt from them to raise Noah, and how she just couldn't do it anymore. She’d meet us halfway-- maybe in Ellensburg? There’s a McDonalds there, she said. We’ll meet in the parking lot. And so we asked Aunt Jen to watch Jaylen, hopped in the truck and headed east. We would have two hours on the road, and it already felt like an eternity.
We had only seen one picture of Noah, which his aunt texted a few days before. We didn't know much; he was 18 months old; he was Chamorro; he needed a home. He’d been through three sets of relatives and the state couldn't find anyone out east to care for him, so they expanded their search to western Washington and found us. They connected us to his aunt, who was anxious for him to go. So we drove east on I-90, arriving early to a town where we had never been. There would be no social workers. No court appointed special advocates. Just Noah, his aunt, a friend of hers, and us.
We were nervous. And eager. And anxious. And the weather was hot. We weren't naive like we were with our first child, or broken like we became with our second child. Not this time. This time we were awake. Painfully awake. Fully conscious and fully aware of everything we didn't know.
We drive in silence, and I start imagining all of the things waiting for us. Who will this child be? What will he need? Will we be able to do this again? I’m making lists in my head of the friends and counselors and connections we might need. Let go, I tell myself. It'll be okay. You've done this before. You know what to do. I sit up tall in the passenger seat of our black truck, grab at the handle on the dash board but not too hard, and try to relax.
We see a Starbucks. Something familiar. Drive thru? No, we have time to go in. Brown wooden chairs greet us. Green straws. The smell of espresso grounds me, re-situates me back in my body. I order an iced Americano, and feel the cool bitter taste against the back of my teeth. Adam orders a green tea, because we were in shape back then, and green tea was on the diet. He’s wearing a grey polo and I’m in wearing green plaid. What do you wear to meet your child for the first time? With Jaylen it was a red tractor shirt because we were told he liked farms. With Jade it was baby blue and orange. For Noah I wanted to look approachable. For his aunt I wanted to look parental.
The coffee is helping me calm down. Adam is giddy. We post on Facebook. "One quick coffee before we get Noah- 15 minutes and counting!" and the likes begin to appear. We get back in the truck and head to McDonald’s. We know we won't be able to turn back once that Durango arrives, and the responsibility of parenthood that awaits us makes it feel like our truck is moving even faster but at the same time the road feels sticky. Like hot asphalt before it cures- you wanna go faster so you won't get stuck, but moving fast doesn't keep you from sinking in deep. And even after you get through it, remnants stick to you to remind you where you've been.
Adam and I were at one of our lowest points just before getting the call about Noah, 18 months into a state-ordered separation of Jaylen, our son, and Jade, with whom he shares a mom. Jade lived with us from birth to 9 months, at which point the state identified and introduced her to her birth dad James. Nine months later, on Christmas eve, they moved her in with James and his girlfriend, and separated her from Jaylen, who we had adopted. Brothers and sisters have a right to grow up together, and parents have a right to raise their kids. When those two things don’t align, it gets difficult.
The next 18 months were spent building relationships with her dad's family, and keeping Jade and Jaylen connected with weekend visits. The state is clear that kids do best with their birth parents, and foster parents don’t have a say in where kids land. At first, James' girlfriend took great care of her, and though there was a lot of adjusting, we all seemed to be doing alright. Weekend visits were filled with laughter. We hosted Jade’s second birthday at our house. Shortly after that party, James gained full parental rights. The state closed the case.
And then things fell apart.
James fell into a very dark place. His girlfriend left. For the next year, I wasn't sure who or what would be waiting for me when I would drive down in the black truck to pick up Jade on Saturday mornings. Her smile had faded. She became distant, withdrawn. The car rides, once full of laughter, grew silent. She stopped growing. Her dad became increasingly irritated, and his mom, Jade's grandmother, increasingly confrontational. Jade and her dad moved several times, lived out of his truck for a bit. They stayed with friends. We offered for him to let her stay with us until he could get his life back on track, but he wasn't ready for that. We brought him mattresses for them to sleep on.
Jaylen could see the changes in his sister, but wasn't old enough to understand why she left, or why we weren't bringing her home. And the State, who had delivered her to her birth father, was not interested in checking in and seeing how Jade was doing, since the case was closed. So we kept her room ready for her to sleep in every weekend, and promised to have a warm meal and a hot bath for her every Saturday. We offered Jaylen assurances that we would do everything we could to keep her safe. And to keep him safe. We told him no one was going to come and get him, as they had five times before he arrived in our home. I would lay with him until he went to sleep, because that was the only way he felt safe. But after he went to sleep, Adam and I would cry and argue as we slowly fell apart. And over time, all of our love was spent on Jaylen and Jade, and there was none left for each other.
We pull into a spot in the front of the McDonalds parking lot and wait. Adam lets me choose the music because he knows that calms me down. I recognize I’m still holding on to the handle on the dash, even though we’re stopped. It’s hot in the car as I scan for a blue Durango. I’m thinking about Jade, who was 18 months old when she left. Noah is 18 months old now. Jade just turned three—Jaylen helped me and Adam make her a green cake for her birthday last weekend. I’m wearing a green plaid shirt. Approachable. I see the Durango pull in. The Guam sticker is glittering on the back window. I take a deep breath, let go of the handle, and go to meet our third child.