Author Trigger Warning: This is not light reading on the topic of cancer. It is what I have had to live through with the disease as I continue to fight for a cure. If you truly want to understand what it is like for a patient to go through this journey from the inside, then read on. If you are not prepared for the sort of darkness this disease brings it may be best you pass on reading this post.
March 23, 2017. 9:27am
That was the exact time my life changed forever. I went to the doctor with something that for over two months had been eating away at my normal life. Before I walked into that office on that fateful day, I had been slipping in my day to day activities. I walked down a long hall at my work literally leaning against the wall. My knees often buckled when I rose from my seat. I tried to make myself eat lunch, buying the smallest amount of food that seemed at the time I purchased it would be enticing enough to eat – it often wasn’t and I’d stop only after a few bites. Nothing tasted right. I knew something was horribly, horribly wrong. For over a month I hid it from my husband. I said nothing, I just did my best to shower and get ready for work and slowly crept out of the bedroom and with wobbly knees I was so unsure of I made my way slowly down the staircase to the car (once seated I was safe for the journey) and then I drove myself to work.
My day to day for the first two months of that year were sketchy. Thankfully, being a network engineer I didn’t have to visit too many people at their desks when things went awry. I could use remote technology to remotely control their systems and rectify the situation. If it warranted further assistance we had it within our power to ask for one of the operations crew to make the physical visitation to assist. So, for the most part I could stay rooted to my chair and desk while I continued to play that things were still somewhat normal. Lunchtimes soon turned into me just putting down the back seat of my car and trying to rest for a half hour or so to gather my energy to finish the day. Once the trek to my car was so bad I nearly fainted in the parking lot. I was scared to the point of absolute silence over what I was dealing with. I tried every way to do things as normally as I could.
It was a lie I told myself. Because I desperately wanted it to be true.
Have you ever watched Lord of the Rings? I’m sure you have. It’s one of my favorite series of films. But lately I’ve come to see it analogous to my diagnosis of cancer.
I even had a moment like Frodo, Aragorn, Gimli, and Gandalf (with the others) at the Mines of Moria where they struggled to find the phrase to open the gates and enter. I called my doctor with the symptoms I’d been having. This was in February. I explained everything that I was dealing with and the scheduling nurse informed me that it would be three weeks before I could see him. I took the appointment. What else could I do? I asked that if there were a cancellation please call me and let me know.
When I saw the doctor on that fateful day, and his preliminary examination startled him, he asked why I had not informed the nurse of the severity of my situation. I told him what I said and he shook his head and murmured something about how they want to hear a certain phrase that would escalate the necessity for an earlier appointment. Somehow I missed the memo on that secret decoder ring phrase that would have gotten me an appoint sooner. I grumbled a bit inside, casting a heated gaze at my husband along the way but it was what it was. We had to deal with where we were at that time. But after he had me wheeled down for the ultra sound it was confirmed, I had a tumor and it was most likely cancerous.
I had no feeling about it. I couldn’t grasp onto anything inside to tell me how to feel about those words from his mouth. I just nodded and glanced at my husband but said nothing. Flash back a year ago and I was eating breakfast at the dining room table, my granddaughter was watching cartoons (it was a Saturday morning) and I remember as I finished up something in the back of my mind said, “You’ve got cancer …” I had to no reason to think that. I felt fine.
It was fleeting and I soon forgot about it. But I recalled it the moment the confirmation of my disease left the doctor’s mouth. I think this is why I couldn’t grasp at anything to express what was building inside over this shocking diagnosis. The next thing he said was that on Monday, the 26th, (this was a Friday morning) he wanted me at the hospital for surgery to remove the tumor. I had two days to prepare over the weekend. Now, up to this point I did everything in my life to avoid being in hospitals. No broken bones, no prolonged diseases or ailments that would require a stay in a hospital of any kind. I detested being there – even to visit others. Now, at 52, I was going to have my first operation. I was terrified.
But I dutifully went to the appointment, went through the process of being prepped for the surgery and even tried joking with the nurses while I was being prepped. Oddly enough, it was an outpatient surgery. As soon as I came out of it I was sent home. Two days later I was back at work. It all seemed so surreal. A part of me was missing, the cancerous part, but still it was something I was born with that was now taken from me – leaving me marked as some sort of freak. It was then that the cancer began to voice itself. Like Smeagol, Gollum began to whisper to me.
“I have you now, my precious …” Don’t laugh. It felt very real. I walked around much better and was able to start eating again in a normal fashion. But still that voice that I had cancer lingered. I knew the battle was far from over. In a week’s time from the initial surgery I had to go for a PET scan to see what residual cancerous cells still existed. This was news to me. I didn’t know that I could have it elsewhere once the tumor had been removed. The PET scan revealed that I had cancerous cells in various places along a chain of lymph nodes that lead to where the tumor was. I would have to have chemo treatment to eradicate them from my system.
The good news, according to my oncologist and my husband (who has a medical background having practiced medicine early in his career) was that the type of cancer I had was 98% curable. I had one of the “good ones” …
Nothing felt great about it. There was no “good” in any of this.
And still that Gollum voice raged inside … with over tones of Darth Vader: I have you now … don’t think you’ll get away that easy.
Slowly I informed a few people I trusted at work what I had. Luckily, the company was a big advocate for cancer (often having huge company wide drives to donate for research for the disease and for additional resources to be funded). One of the programmers, a Brit ex-pat who I got along with came over and revealed to me he was dealing with stage 4 colon cancer. But his prognosis was excellent, he was beating the cancer. He told me that if I ever wanted to talk – during lunch or whatever – he was there for me. Then he gave me two points to take to heart: 1) Allow myself to feel (without guilt of any kind) what I wanted to feel; and 2) Find a support group – “You’ll need them more than you know.”
I have followed his advice on those two profound points and it has what’s kept me sane through out this long battle I’ve been on.
So where’s the darkness I warned of?
It’s been here all along. It whispers to me. When I cut up an apple to have as a mid-day snack, it whispers, “Enjoy this, it might be the last time you eat one.” When I’ve been writing, working on my latest novel, I type out a couple of thousand words and then I feel the need to nap, it’s there too, whispering, “Can’t keep up with what you used to do, huh?” I don’t sleep soundly now. Even with the drugs my oncologist prescribes to assist with that. It’s a restless sleep – with that Gollum voice ear worming into your mind terrible thoughts of how others close to you will deal with your death. You panic, you toss and turn trying to shut it down, find some sort of peace from the constant whispering that it does.
You know what else it does to you? I makes you one of the best actors on the planet. Laurence Olivier (were he still alive)? Bring it Larry, it’s on. I can out act normalcy to yours any damned day. My whole life is one long scene that has no resolution, no curtain call, no bows. I smile, I make jokes, I converse, all the while that Gollum voice has a hold of me inside, eating away at my resolve to present myself as I always have. Make no mistake, it’s an act. Underneath, I am white-knuckling it every damned day. Nay, every damned second.
In group we talk about how the disease affects our lives and those around us – our loved ones (friends and family). It often comes up that there’s that little squinch that happens to their bodies when our friends or family ask, “how are you feeling today?” – it’s almost imperceptible but it’s there. A slight pull back of, “Just say you’re fine so I don’t have to know too much.” So, you learn to edit yourself on the fly. You lie if you have to. To comfort them. Because that’s part of the gig now. This disease has you by the proverbial throat and is whipping you around like a favorite dog chew toy but you’re expected to say, “It’s okay, I’m dealing with it,” and move on so they feel they’ve done their part to inquire, but also your part to not say what’s really fucking happening. As if by imparting some small part of it they, too, will catch it somehow. That the mere exchange will cause those cancerous cells that have clawed their way into every part of you will some how choose that moment to release themselves and fly out of your mouth and into theirs.
It’s absurd, but people react to you very differently once they know you have it. There are exceptions, certainly, I am speaking in broader terms here. Family and friends who have been exposed to others who have had cancer and actually helped them through it, get it. They ask you sincerely and there is no pulling back in their body language. They know all too well what is raging inside: the anger, the hurt, the freakish Gollum like feeling that overwhelms you at every turn.
This disease is insidious. It robs you of your normalcy. It takes, cleaves and eats away at everything you hold dear in your life. I watch others complain of everyday things like co-workers or some asshole on the freeway, etc. I want to scream at them how I’d like to have those troubles again! How dare you give me your common place problems!
Instead, I blink, holding back angry tears, and just smile as best I can and nod while listening to their simple problems in life.
Or seeing their accomplishments. One part of me, the small part that used to wholly be me, is happy for them and celebrates what they’re going through. But the majority of me grows darker, more malevolent over their happiness. I don’t want it. I fight it. I don’t always win. But I still fight. Please know, the fight is there. Fucking tears …
My husband is a tremendous support. While I try to sleep at night he is busy researching for immuno-therapies that are on the rise and are providing wondrous cures for all sorts of cancer now. We are entering a new age of treatment – one where radiation, surgery and chemo will be a thing of the past. The trouble is, they are all in clinical studies that you have to match up to. So, he combs the net at 2 to 4 in the morning searching for studies that I might be a fit for. This is the same man that examined over 3000 pages of my medical records to distill them down to a narrative that we can present to any doctor or specialist we see that gives them exactly the points they would be looking for from a doctor’s perspective – sparing them the effort to comb through those records themselves. They often thank him profusely for the effort. It shortcuts our time with them and we can get to the heart of the matter. He’s truly a superhero when it comes to my care. And it’s not easy on him. I see the toll my disease is extracting from him. He’s tired, too. Being 16 years my senior it’s quite a bit for him to take on being the caregiver in this situation. I do what I can to alleviate that as much as I can but sometimes it can’t be helped. I hate myself when he has to do something for me. Not because it takes from him insomuch as I can see clearly how much this disease has robbed me.
And to be clear about the rigors of chemo – it is different for each – mine required a hospital stay for six days. The chemo would start at 10am and continue through the day and into the night ending at 6am the following morning for EACH cycle. I had roughly three hours to be free of that pump machine they had me connected to. Oh, and to make sure that the effects of chemo weren’t too harsh I set up a maze with the pump machine that I had to navigate amongst the table tray and the side cabinet next to my bed that let me know if I could do it without hitting anything that I was still in some sort of control of my muscles. That the neuropathy that the chemo causes hadn’t crippled me to the point of not being able to maneuver as I needed to. All the while I had to fucking get through it without pissing myself. But I did it so that each time I could get through the maze of tables, cabinets and that five pronged wheeled pump machine and still make it to the bathroom I was doing good. It sounds meager, I know. But to me, it meant the world. Don’t think I am not crying a bit as I write this knowing this is the level my life has come to.
There is this pervading feeling that like Frodo you are carrying the ring to Mount Doom. And every little horrible thing it does to Frodo along the way you can completely identify with it. You can’t have a moments rest from it. You can’t put it down and walk away just to breathe and feel like it’s going to sort itself somehow. It’s a race. It’s exhausting. And your beat. Like that chew toy you feel whipped around, battered and bloodied lying in a swill of piss and mud and someone inside of you says “Get up! I’ve got more where that came from.” And you’re strong because you’ve endured. But you’re tired.
So. Very. Fucking. Tired.
Tired of editing yourself, tired of lying to others saying you’re getting through it okay when you’re not. Raging at the disease every time it whispers it’s malignance to you. Watching yourself waste away – the chemo it is said adds ten years to your life from an appearance standpoint. I see it. It’s like those years were robbed of me in just one year of fighting this disease.
Yet, I am tempered in that anger and rage because there are those in my group who have been battling it longer than I have. There are some who are resigned that there is no cure for them in sight. They manage the rest of their lives knowing that chemo will be a part of it until they take their last breath. So, I count myself lucky (so far) to be amongst them but not in their shoes. “There but for the grace of God …” right? I’m an atheist through and through but I get the meaning behind that phrase.
I just received a call from the Cancer Center that is overseeing my case as I write this post. My PET scan has been approved by my insurance. With the last of my chemo completed this is the moment where we see if it did its job in getting rid of everything. Even if it’s clean this time, I have to have another six months from now and check it then. This is the nail biting time. A recurrence can spring up at anytime if the chemo wasn’t completely successful. So, while I have gone through two full rounds (four cycles each) of chemo to address my cancer, I am still feeling shaky that it took. The reason I stand on this is that my cancer has not behaved like these types of germ cells should – slow moving and responding well to chemo. I’ve been both resistant and the disease spread from two tiny spots on one lymph node in December to spread along my lymph chain within a matter of weeks. So, no, I don’t hold out that chemo did it’s job. I am expecting something to be there and that my journey to fight this thing will rage on.
And I am scared. I am fighting for my life while trying to keep a smile on for the rest of the world to see when all I want to do is scream to the heavens “Why me?!”
I write, escaping into my novels for some refuge from the Gollum voice telling me there’s no Mount Doom in my future. If I let my characters voices clog my head I can’t hear that Gollum creature trolling around back there. But I feel the blood it extracts from me – even when I can’t hear it. I’m strong … but I’m tired.
So, very, very, tired.
Until next time … (fingers crossed)
A writer’s journey is a funny thing. Not that I think that we don’t fold our towels in some magical manner than others. Or that we pay our bills using money from Gringott’s (that’d be nice if we did … ’cause elves and dragons … jussayin’). No, I think that it’s more that we often jot down things that happen to us. We document lives – our own and those characters and worlds we create.
It’s this documentation that I have rambling in my head as of late. Why? Well, first it started off because I am recasting my Angels of Mercy series cast in a YA format. But that wasn’t the end of it. Angels of Mercy was always meant to be a metaphorical exploration of characters – a character study of three main protags over the course of the same timeline – each boy having a different perspective over the timeline and the answers to the drama I’ve thrown at them. Each boy has an angelic name that is emblematic of their character traits. So, recasting them in a YA setting I wanted to change it up, take the Buffy the Vampire Slayer/Supernatural route and make the story about actual angels and demons. I also took them back to the 1907s so I could omit a lot of the tech that characters interact in current stories and focus purely on character. Eschewing trappings of today entirely. Old school, er, uh, as the kids today spell it: #oldskool. (Ya gotta love them kids).
Since I grew up in the 70s I decided that I’d throw in all the stuff that happened back then that I could recall, augmenting with image searches and binge watching TV shows of the 70s to keep in the groove in my righteous way. #RightOnMan!
One of the shows that I binged while writing Mercy’s Little Angels was The Mary Tyler Moore Show.
I loved this show. I watched it religiously when I was a kid. However, the rewatch completely threw me. The writing was still brisk and funny, but with modern eyes the sexisms and subversive language, while progressive of the time, fall woefully short of what we think today – which is as it should be. But there was another thing I took note of: Lou Grant (played to perfection by the inestimable, Ed Asner). Why? Because there were elements of Lou’s character that mirrored my husband’s. J, my husband, is sixteen years my senior and a relative contemporary (give or take a decade) of Lou’s character. He’s of that age, of that time. I always found my husband to be an amusing man – one of the many traits that endears him to me. I fell in love with his mind far before anything else about him. That remains true to this day. With my recent cancer scare it was his complete and thorough knowledge of medicine (as a retired physician) that kept my oncologist’s feet to the medical fire. I credit my slow climb to win this war against this awful disease to him. He is the light that presses into the night when all I feel is darkness. He’s my angel (I’m not religious so for me to say that, it’s something, believe me). It’s why Angels of Mercy was dedicated to him with the first book. He’s always been that light in my life. And my bout with cancer wasn’t the only time he’s done that.
When he and I got together I had a cat I’d had for about eleven years to that point, his name was Gizmo. I say was because he passed in 2006. But the thing is he wouldn’t have made it to that year (I got Gizmo in 1994) if my husband hadn’t been there. In his eleventh year Gizmo was diagnosed with feline diabetes. This completely restructured our lives. But by then J’s life had taken a turn with his own heart disease and so he built a regimen for himself and Gizmo to monitor and administer their meds at the same time. Everything in our lives revolved around Giz and J’s routine. Dinner plans? What time did Giz require his insulin shot (yeah, shot)? Don’t forget your meds too, hon. “I got it …” he’d call back to me as he went to do both. Movie night? Again, times were selected around their med schedule and feedings. EVERYTHING was according to Giz and J’s schedule. But here’s the thing: Gizmo didn’t suffer for his disease for another 11 years. J meticulously monitored, double checking the vet’s current tests and lab results at every turn. Gizmo’s comfort and quality of life was beyond anything I could’ve done for those remaining 11 years of Gizmo’s life. They bonded over that disease. I’d often come home from work to hear the hubster and Giz “talking” in the kitchen while J prepared dinner for all of us (in some shape or form). Until Gizmo’s stroke at the age of 21 (admittedly VERY old for a cat’s life) J gifted him with a care and quality that always left me breathless. When the stroke happened I saw a crack in my stalwart, former college football playing husband. He broke. It was quiet and removed, huddle up to my cat and whispering such sweet words to him about what he’d do to make it better. This from a life long “dog” person. Yeah, you read that right. That’s how far he’d moved along that pet line to embrace my cat. It’s when I realized he was no longer “my” cat. Giz looked to J for everything. J would have to pick Giz up and put him down for feedings. J would follow him into the cat box area in our bathroom and if Giz made a mess, he’d look up at my husband (I witnessed it) and J would just whisper to him that it was okay, he’d take care of it.
Put simply: I’d married a gem of a man.
When Giz passed – we eventually had to put him down because there simply wasn’t any hope – he’d suffered another minor stroke. The end was eminent, there’d be no magic cure. On February of 2006 we took him to the vet to say our goodbye’s and were there to be with him as he slipped away. My husband broke. This man who didn’t do emotional displays, who didn’t do anything public (no social media presence, remember?), lost it. We went home, he cried silently as I drove us there. He went into a pseudo seclusion. His own medicine regimen suffered because he wasn’t doing Gizmo’s any more that kept time. Things got messy. It went on for months. We languished. It was the most silent part of our relationship. We talked about a lot of stuff. We just didn’t talk about Giz much. His bowls, toys and items weren’t packed away for weeks. J wouldn’t let me. It was then that he told me the moment he fell in love with Giz.
When I first moved to San Francisco, to be with J, my cat stayed behind with my ex. When he eventually moved to SF six month’s later (we’d always planned on moving to SF together – but that’s not how it worked out – even if we’re still friends to this day) Giz made the trip up with him. J was there to help sort my stuff from my ex’s. Gizmo was amongst the moving items. My ex had the cats we had (there were three) mildly sedated for the driving trip (some 10+ hours). When J saw Giz for the first time, those big blue eyes catching J’s brown, J said he swore he would take care of Giz for the rest of his life and that he would never let Giz go through something like passive sedation to make a moving trip easier. J never let that happen for the rest of Gizmo’s life. Again, a supposed “dog” person did this.
So, why the comparison to Lou? Because, so many character elements my husband has are perfectly aligned to that character. J has an enlightened mentality to our times, but he also is staunchly attached to his era. It’s a duality I live with that fascinates me to this day. And the reason I am documenting this aspect now.
You see, we’re in a similar situation. Not only with my battling cancer but one of our two cats (that we got 2 years after Gizmo’s passing), Katya, the Bengal, is having health issues. Her eating habits are off. Being a Bengal, Katya is 5/8ths wild. Her breed is special because it was created by a geneticist who bred Asian leopard cats and snow leopards into the standard silver tab because those leopard cats had a natural resistance to feline HIV and Leukemia. Bengals are also known to have robust systems that keep them fairly healthy throughout their lives. Given our situation with Gizmo this seemed like a good thing.
One thing Bengals are subject to: old age. No getting around that. Katya is now 15. And, at the moment, has been faltering. As I write this early this morning, I woke because my husband had been quietly crying with Katya curled up to him as he whispered that she needed to eat more, and that he’d think of something to help. My husband’s a bright guy – remember, he vociferously and meticulously kept my oncologist feet to the fire throughout my cancer scare – writing medical analysis that eventually went to Second Opinion and got them to see his point of view on my case – they concurred. But animals, it seems, are his waterloo. Katya became J’s return to life. He was always proud to show people his “leopard” – she has rosettes like a leopard because of her lineage. Bengals have been clocked out in the wild at racing 40mph. Did you know that? He’ll tell you that if you meet them. Katya is his pride and joy – I’m not saying I take a back seat, but I do often chide him that the “fish wife” wants him and I have to step aside.
Like Lou Grant, a tough guy exterior, coupled with an acerbic wit and a fiendishly clever sense of humor, my guy has a lot in common with Lou. But it’s the last character trait I’ve yet to mention about Lou that cleaves my heart in two: his heart of gold. Like Lou, when you strip away all the bravado, the humor, the wit, when you really boil it all down, you have a man who loves whole-heartedly and is “all in” with what you’ve both got going on in your life.
This morning – at 4:50am I woke to his muffled tears and sniffles as he whispered to Katya curled up into his chest. Like a cat erping up a hairball, J’s emotional displays are a HUGE wake up call. I often tell people I have to really poke him hard to get him to say anything that is hurting him. I tell doctor’s, when we take him to see one, that if J goes, “Ow, that hurts,” it’s equivalent to someone coming along an whacking your arm off with a machete and then pouring iodine on the wound. J doesn’t do “ow.” He’s very quiet that way. So, when I hear him break it’s like an Emergency Broadcast alert has gone off in the house.
This morning was one of those moments.
He kept apologizing. Like Lou Grant apologized. It was messy and sometimes incoherent. And I found myself not too unlike Mary grappling with the helplessness of wanting to help Lou (even if they weren’t married). We fed Katya 3 hours early this morning because she seemed to want to eat. Something she’s been meh about eating for days. J became emboldened and wanted to take care of it right away. So there we were cutting up filet mignon for Katya (yeah, he bought her absolute favorite to have on hand in case she got hungry). She ate. She seems more active for the moment. My “Lou” seems happier, but there’s a knowing sadness creeping in there. A Gizmo laden one I’ve not seen in years. Fifteen plus years to be exact.
I know what’s coming. I see it, even if he’s trying like hell not to. We’ve decided to take her to the vet on Monday morning. She’s not hiding (usually a very strong sign that something is amiss in a cat), she’s not stopped pooing or peeing – so we’re good there. She’s still grooming regularly – another sign that things are semi-normal. She just does EVERYTHING slower. I’m fairly convinced it’s old age that’s crept up on us while we weren’t watching. It seems sudden, it’s caught him off-guard from his prized leopard, but for those of us of a certain age, as I tell him, that old age thing happens pretty quickly when it comes. We suddenly can’t kneel easy anymore. We could do it yesterday, but not now. Things like that.
So, I watch my Lou. I see his worry and concern. And, like Mary, I do what I can to help the big guy out. There’s no easy win here. There’s no magic balm that will set this right. THIS IS LIFE. It’s how it works. He knows that, I know that. Katya certainly knows it on some level. But it did make me realize and distill the man I married. I’m okay with that. Hell, I signed up for it. Tonight, while he kept Katya close to him on the bed, with me holding Zorro (our Somali cat) close, we watched “Victory at Sea” and “Zorro” (the Disney Guy William’s version from the 1950’s) so J could relive a part of his boyhood past. He was six and ten respectively and he talked a great deal about why these two shows (along with The Swamp Fox – which is next on our list) were so prominent in his childhood. The four of us lie on the bed, watching old TV and letting my Lou reminisce about his youth. In this I saw the boy who had numerous mutt dogs – all called Penny for some silly reason – Penny One, Penny Two … yeah, that’s my guy. He named them all Penny so it’d be easy to remember. Well, that’s what he says.
I now think, after his emotional breaks with Giz and Kat, that he named all those dogs (who were terrier mixes, btw) Penny because he needed the next one to fill the shoes of the Penny before her. It was his way of keeping continuity in his youth. That explains a lot to me about the man I married. The man who diligently sees to our pets care. Cat or dog. Like Lou Grant, beneath that gruff exterior is a heart of gold that is undeniable and the source of my love.
Until next time …
Humans love to classify things. We love order amongst the chaos. It’s just how we’re wired to short cut how we see the world. It gives us order and cohesion that is comforting to us. It makes the world easier to navigate.
But I write this as a queer writer. It’s a word that used to be hurled at us to open new wounds, add salt to old, and denegrate us to the point of tears or real physical gut-wrenching pain. As a matter of history, we, as a community, have used that classification to identify who we are and establish our voices in the mainstream political spectrum as we vied for a place at the table to establish and hold onto our rights. In that particular venue we needed to define ourselves so people not of the community could see us collectively as well as individually as Gay, Lesbian, Bisexual, etc. In the beginning Gays and Lesbians led the way, albeit with differing agendas. Men established their separatism by holding it close to the bone sexually. Whereas the Lesbian movement was more about poltical rights, personal well-being and emotional quality of life. They both realized in the early days of the movement saw that they needed to present themselves as the next door neighbor. Someone the mainstream knew.
It was important to our early movement to make us seem like any other neighbor. We were human after all. We ate, made a home for ourselves, paid bills, worked, sought personal relationships just like any other human being on the planet. The Mattachine Society and the Daughters of Bilitius did their level best to put us in that light early on. It started the national conversation on the right foot. Our best foot. That’s not to say that there weren’t detractors from within both those groups. As we’ve seen in We Rise, the mini-series that covered those early days produced by out academy award winner screenwriter, Lance Black, there was a healthy amount of discention from within those movements. Queerdom already had a propensity to refuse to be classified so rigidly. For many within who went along, it was a personal compromise they thought was worth it to gain some value and respect in the greater mainstream.
So why the historical recap? Because, as of late, I’ve seen quite a few of my queer brothers (I use queer purposefully – acknowledging that many of my generation have a visceral reaction to that term) across the spectrum as identifying as anything other than “strictly heterosexual,” commenting on works that don’t fit into the gay rigid classification. Where gay men are meant to be “just one way” with each other – much like how the CIS HET world tended to hold against us (why aren’t you dating a woman like everyone else?!). I think while we’ve asserted ourselves in the mainstream conversation we’ve lost sight that it was queerdom we were embracing. The specifics of where we fall within that rainbow laden spectrum is quite literally irrelevant. We just all can agree we’re queer – derisive commentary from close minded heterosexuals be damned. It’s what we are. Outside the perceived norm, which we ALL know doesn’t exist.
I watched as my gay identifying brothers derided Andre Aicerman’s Call Me By Your Name option into a cinema work as “not gay.” I withheld my own commentary on it until I both read and watched the adaptation. It is decidedly not “gay” by rigid classification for those that need it. I know. I used to count myself amongst them. It’s one of the reasons I hold a great ire for MM Romance which is certainly NOT gay, either. It’s gay in name only but is predominantly written for straight women by straight women who are more in love with men in general and choose a male/male pairing so they can have more of that man-pie they crave. It has nothing to do with queer men. I know some gay men who enjoy it. That’s their call. I personally don’t agree with it. I like stories closer to the bone of who we are. Not that they can’t have the romantic trope of a HEA (happily ever after) or HFN (happy for now) endings. Our stories can certainly ascribe to those hopeful ideals. But I like it going into our stories when I don’t know how it will all end. I love that churn I feel, that gut wrenching “no, no, nonononononono,” that happens when things go unexpectedly sour. Why? Because that’s how it happens. The best of circumstances, the best relationships, all hit snags. What I am after is what happens next. What do each of these characters, already maligned in life because of who they are or how they represent themselves rise to the occasion? Do they implode? Do they rise above it (much harder to do in this world – but boy howdy, it’s a great thing to see when they do!)?
At the same time I read K.M. Soehnlein’s The World of Normal Boys. Two works that couldn’t be more different in approach but both explore the exact same turf: “Normal Boys” who defy classification. Boys who find themselves in homoerotic relationships that push against what they expect out of life – the script we, as men, are given to us by society. The one gay boys say, “fuck it, that ain’t me …”
The World of Normal Boys has the main character, Robin MacKenzie, discovering why he’s different from other boys. It’s not because of the exposure to the museums and culture his mother brings to him in New York, though it is certainly part of it. Instead, Robin discovers his sexuality because he begins to crave the touch of those “normal boys” in the form of two non-conforming boys – outlaws – in his high school world. Todd Spicer is a stoner boy, born into a rich aspiring family, but bucking it all and playing a bad boy. Eventually, Todd and Robin find themselves in a sexual situation that Todd easily explains away as his being a free spirit, brought about by an inspirational film he saw about a guy doing whatever the hell he wanted to in life. There were no limits to life that way. His messing around with Robin sexually held no more meaning than smoking the cigarette they shared after their tryst. The other “normal boy” in Robin’s life is Scott Shatz. Scott is a lone wolf (Scott’s own label for himself – isn’t that how we all see ourselves in our teens?). But Scott soon befriends Robin and their relationship evolves to Scott and Robin messing around sexually as well. Scott keeps telling Robin “not to make a big deal about it” when Robin soon susses out that it IS a big deal but Scott and Todd don’t want it to be. What I find so interesting in this work is this is how it works for gay boys. We seek the comfort of other boys who are often not like us, but when pulled away from society expectations other things take flight in the dark, drifting through clouds of marijuana like dark birds who want something secretive that says they are their own man. Only to have the harsh light of day come piercing through their dark dreams and bring them all crashing to the ground of reality. So many gay boys have this story. I count myself amongst them. It was how my early gayboy days revealed themselves to me.
Conversely, though not all that different, Call Me By Your Name, explores the same territory. Men who discover something so revelatory and life shattering that they become swept up by it but find, at the end of the day (or summer in this case), must return to the world better and healthier for their experiences, but no less resigned to life in the rigid normalcy of a heterosexual life. Elio and Oliver meet over a summer of 1983 when Oliver, an American, is hired by Elio’s father (an archeologist) to catalog their findings from recent digs in Italy. At first the story moves about with both men, Elio’s late teen crush on a girl, and Oliver’s supposed romantic summer fling in the arms of another woman. Yet, Elio and Oliver soon start to spiral around one another. An epic dance of two men discovering each other in ways they don’t expect. Mainstream rules say they must reject those feelings at first. It’s part of that script should they have to run to the “troubleshooting” section of that heterosexual manual they all carry. But that troubleshooting doesn’t offer much in the way of hope as Elio keeps longing for Oliver’s attention. When the subject finally rears its head it’s outed under the guise of Elio wanting to discover what Oliver knows about being a man and navigating the halls of love. Hero worship. Oliver, for reasons not provided fully in the work, knows it is something more. He gently lets Elio pull close but eventually pushes him back with a clear, “we need not speak of it.” Saying that with the clear implication that they certainly won’t act on it. Only, they do. And thensome. Peaches, anyone?
Once they come together they are fairly inseparable. Elio’s parents, both educated – delightfully displayed not only in the father’s line of work but also of the intimate moments the three of them share when their mother translates a german work into english as her husband and Elio listen louging next to her. Indeed, the film does this to brilliant effect by having French, Italian and English rotate – often within the same speech as the story moves along. These are not, say, the close minded parents of a similar film that takes place at the same time, Edge of Seventeen, where the parents are working class. Elio’s parents clearly detect that Elio and Oliver are involved in some way. It is the final sequence after Oliver’s eventual departure at the end of Summer that his father has a heart to heart talk that clearly separates European fathers from their American counterparts. While I recognize that not all American parents were close minded (mine weren’t, for example) and all Europeans are open minded, I would think that it is one place where Europeans are ahead of us and have been for quite some time.
What I love most about these works is that they informed me in writing my own. In Angels of Mercy, I quite literally fought against the twin brothers of my series as being rigidly gay. I should’ve known better. Hanging around my queer granddaughter and her queer friends, I know that the spectrum is vast and varied. Yet, I pushed back. I tried to force my boys to be gay and gay only to the point where it was literally strangling the story. I had to step back and have that same heart to heart Elio had with his father – which literally smacked me in the head when I saw it before my eyes. It is better to have the courage to explore love for love’s sake – whatever form that takes. Eventually I was able to let my previously defined gayboys as pansexuals – still part of the queer spectrum, just not wholly of the gay classification. Marco and Pietro discover that they fall in love with who the person is, not what junk they have trapped in their pants.
After all, isn’t that what we’re truly after? #LoveIsLove has greater implications. For me, I’ve learned not to be so craving for a “gay” story – whatever that is. I’d rather it be queer and let me discover it along with the character. It is their journey that brought me to them in the first place, not mine. I want to know what they feel and aspire to, not what I would do.
I’ve come to realize that all my works may focus on first person narrative, but they are essentially ensemble pieces. It takes a village and all that rot.
I am a queer author, writing queer works, and finding myself wholly embracing the term and seek the works of others who want to tell stories that explore that in all its infinite varieties.
Until next time,
– SA C
Okay, maybe not totally. I can’t put the blame on someone because they created something they were passionate about. But what art does, if it’s at its best, is to inspire other artists to create. So, in that case, it is totally Whedon’s fault. He inspired me. His storytelling for Buffy the Vampire Slayer (yes, I even endured the terrible movie version with Kristy Swanson and Rutger Hauer – in the theater, as a PAYING customer no less – so I get extra-slayer points for being a supporter from the very beginning). I didn’t buy the movie version. Not when it’s available to rent. I’m not that much of a freaky fan.
I had the pleasure of meeting Mr. Whedon at Comic Con one year. I’d always heard he moves around in a constant state of exhaustion – the man works so hard all the time – and my meeting with him it was evident that even within the marketing hoopla of what he was there to promote that I was very judicious with my fawning over having a moment with him. I didn’t even bother him with a photo op because he just looked so damned tired – though it didn’t stop my daughter and mother from having me snap a picture of them. I’ve got it somewhere in my photo library … somewhere. Even my granddaughter made the rounds at the Con taking pictures with various Buffy actors when she had barely achieved her first year of life (she has the distinction of being Jonathan Strong’s very first baby pic – or so he told us as he took brief possession of my granddaughter so my daughter could snap the coveted pic of them). I already knew the do’s and don’ts of meeting him … chief amongst them was to NEVER mention his brilliant work for the movie Waterworld. That was a sure-fire way to make him walk away from you with a look that would melt you on the spot. We promptly took my daughter/mother’s pic with him and thanked him for his time and spared a thought to let that man rest soon.
He really did look exhausted. I felt enormously guilty for taking any of his time but don’t regret it happening at all.
But I digress.
I’ve always liked the paranormal or supernatural stories. Whedon’s take – when he emerged on the scene in the mid-to-late nineties – was a breath of fresh air. Not only did he have a great female protagonist but she was sharp, witty, assertive (when she needed to be), and completely three dimensional for a superhero sort of story. Who knew pop-culture refs would work in a serialized fictional story and that people were hungry for that sort of snark in their supernatural drama?
I lapped that shit up like mother’s milk.
So why write about Buffy’s influence on my works? And why wait so long between blog posts? Well, I haven’t been silent about my dealing with cancer. I am happy to report that my last CT scan showed that the cancer is gone and the residual lymph nodes that demonstrated inflammation and germicidal (the type of cancer cells for my type of cancer) cells that caused that inflammation had decreased by more than half after the second round of chemo was a complete. I was happy to discover from that bit of news from my oncologist. So the pause from my last post to this one has, thankfully, been a rosy colored one. Things are definitely looking up for me now. And having something like cancer hit you broadside (as it did for me) completely reset my clock – so to speak. What used to be important that was truly frivolous have all fallen by the wayside. Writing, now that I have some strength returning to my limbs and energy overall, has become forefront in my mind and efforts. I think I can return to the land of writing on a more consistent basis than before.
But back to Mr. Whedon and his inspirational scrivenings.
Aside from the Swanson led debacle, I pretty much own everything he’s ever worked on, written, produced (okay, maybe I’ve missed a couple there – but I’ve seen them). His character development, his ability to find tender threads within any character and make them relatable to a wide audience was something I wanted to harness and add to my own writing arsenal.
Before Buffy, words like “Owenness” (when describing the general aura of a character named Owen), or using the word “much” to proclaim complete astonishment (“Morbid much?”) or references to pop-culture slogans in the media at the time “Gee, Willow, I love your dress. How great that you’ve seen the softer side of Sears…” to establish a character’s snarky teasing/bullying were unheard of in night time evening offerings. Here was an over thirty-year-old man who was successfully capturing the rise in pop-culture use in teenage interactions was beyond brilliant.
If anything, it made me listen to my queer granddaughter and her friends far closer now as I write about my own crew of high school social misfits in Angels of Mercy. I want my kids to sound authentic. I think all writers serious about their craft do.
So why this ode to Mr. Whedon and Buffy? Because I’ve decided to do something completely bonkers. On the verge of ending my Angels of Mercy series, I am taking the entire cast of characters and recasting them all in a vampire/supernatural romp of my own. Only to make things even more interesting (at least for me) I’ve set them all back to the disco-laden days of the 1970s. Angel Flight polyester pants, candy heeled platform shoes, disco anthems on the transistor radios – what could be better for a fluffy Buffyesque vampire romp beach read? Only I’ve taken a page out of another author I admire and doing the new series as a freebie web series that I’ll compile during the month of November (using it as my NaNoWriMo) and adding some filler material and backstories to the web series to turn it into a YA book that will (hopefully) be slightly silly, slightly scary and even slightly sexy using the same cast of characters from my literary fiction series in this new scenario.
I sometimes think I need to have my head examined. I am hoping my readers who love Angels will join me and their beloved Angels of Mercy characters in a new story setting. The Same fictional town, same fictional high school, same snarky set of teens. Just toning down the over sex from the main series so it’s more YA audience bound. Maybe I’ll pick up new readers that way. Who knows? I just want to do this as a way to reexamine and explore my characters I know well and throw them into something completely off the wall fun.
I don’t think I would’ve seriously considered this pre-cancer. I think messing around with my own mortality has given me a certain freedom now that I’ve stared that mortality down and said, “Not yet … I’ve still got shit to do.”
I am confident I can pull this off. Whether my current readers will embrace it I can’t say. Fingers crossed and thanks to Mr. Whedon for giving me the idea (I am rewatching all seven seasons from the beginning while I write – giving my eyes a much-needed break from staring at the computer screen for long periods of time). Let’s see what I can do with Mercy’s Little Angels, shall we? The first “episode” hits my blog this Monday (fingers crossed). I hope you’ll join me for the journey in this retelling of my characters in a paranormal/supernatural frivolous romp.
Until next time …
How that simple phrase molded my young queer life back in the 1980s when we were quite literally fighting for our lives. The thing is, when I think upon it now, the phrase has lost none of its meaning. It is still relevant today as it was back then. Maybe even more so since the community has achieved so much from the time those signs first hit the pavement lo those forty years ago.
Recently, Levi Strauss introduced a line of clothing that carries that phrase and queer folks everywhere started doing the bash syndrome (something that really started to gain momentum when Roland Emmerich tried to create a movie about Stonewall). The same can be said for how we bashed the production of Looking on HBO. It’s far easier to bash what we fear is coming our way before we’ve even seen it or experienced it for ourselves.
So when Levi Strauss did the sneak peek reveal, peeps started chiming in and calling them out on the carpet for marketing a phrase that carries a ton of weight with the community. Yet not everyone back then agreed with Act Up! who created the campaign to have our voices heard when no one wanted to talk about the “gay cancer” scare going on.
Silence = Death.
But then I saw what Levi Strauss was doing. My queer granddaughter doesn’t have the context for what that phrase meant to the community. She’s grown up in a world where queerdom has its place in the mainstream conversation now. Sure, as her gay grandfather, I spend a great deal of time educating her on our past. We watch countless documentaries about what our community has gone through. At fourteen, she’s becoming quite the activist. I couldn’t be prouder of her if I tried. I sit in awe of how powerful a woman she’s becoming. My only fear with that? She’s extremely empathetic. She feels what others go through strongly. I know that under the wrong circumstances it can be used against her. So I educate her in how to detect that and how to channel that sort of negativity into something greater that accomplishes her goals. But there are times when things bother her and she’s been tight lipped about it.
Silence = Death.
I can’t have that. Not with her. And not with myself either. You see, recently I was diagnosed with testicular cancer. Being over 50 I am one of the “lucky” ones in that most men who get it are between 18 and 35. Only 2% of the male population can get it at my age. Gee, thanks for that. Couldn’t I have been the 2% of the population that wins the lottery instead? No, my win had to come in the form of a cancer that within three weeks knocked me on my ass so hard that even after surgery I am still feeling its effects.
The thing is, I think I knew something was up but didn’t say anything to my husband.
Silence = Death.
At first it started out innocently enough. I went to the ER because I’ve had bouts with kidney stones and my lower right back was aching something fierce and I thought a stone was on the move. I didn’t want to miss work so I went to the ER with the thought that I’d get some pain meds to get me through the night so I could sleep and still get to work the next day. Well, I had the great fortune that I got the Asian equivalent of NPH’s Dougie Howser – the guy was YOUNG … like teenager looking young. But he was aggressive in that he wanted a CT scan to see if a stone was truly on the move. It was then that they discovered my lymph nodes in that area were inflamed – one so large that it was quite alarming. That was my first clue something bad was on the horizon. The cat was out of the bag, but for some stupid reason I didn’t give it a ton of thought about it. So shit is inflamed. What of it?
Silence = Death.
Yeah, that coulda been me. If it weren’t for my husband noticing that something was off in a moment of intimacy and (being the retired physician he is) made me book an appointment with my urologist to get that looked at. Unfortunately, I didn’t say the right thing when booking the appointment – ya know, the magic phrase that I guess I missed the memo on that all the other guys got – so my appointment was three weeks away from when I called. They must’ve thought it was routine or something. Well, in those three weeks I lost 45 lbs, my balance was way off – there’s video somewhere of me walking down a long hall at work where I was literally leaning against the wall for support but was so out of it that I didn’t realize I was doing it at all. Say nothing of the countless times during those three weeks where I’d get up to go to my car to buy something for lunch and nearly fainting in the parking lot (it was a far more regular occurrence than I want to admit even now).
So the appointment finally arrived. I was weak. I was a bone by comparison to how overweight I was before. Everything started to hurt. My blood tests were way off. My body was shutting down. I know that now. But then the operation came and removed the cancer – which appears from the pathology report was completely contained. So that’s a relief.
But now comes the part every cancer patient dreads … the chemo.
And here’s where it gets weird. They do these blood tests for cancer markers within the blood makeup. All of my numbers are within normal ranges, except for one. And it is slightly above the line in the sand they have for whether you can do outpatient chemo or you have to stay in the hospital on a drip for five days and then recuperate at home for 3 1/2 weeks. Guess which side of that little line I am on. Yeah – in-patient care. Needless to say I am fucking freaking out. My husband has been nothing but supportive as have the few friends and author pals I’ve told. For that I am extremely grateful.
But there are things in my life that I do to help others within the queer arts community. Chief amongst them is the Wrote Podcast. Y’all have no idea just how much time and effort it takes to put a podcast together and to keep it going. And it’s not like we’re getting paid for it. This is out of our love to promote others who write, sing, act, perform, sculpt, paint, etc about our queer lives. We want to champion them. But with my current state, I am having to pull back, leaving my co-host and co-producer Vance Bastian (who I can not ever come up with the words to describe what his involvement – both with the podcast and in my life – has meant to me. He is truly our superhero, our godsend and such a brilliant and caring man with a golden voice that could melt just about anything) to handle the podcast on his own. I’ll try to stay connected, but I’ve been told that energy will be a thing with me over the next four months while I go through the chemo.
Good news (if you can call anything remotely related to cancer – good) is that the success rate for my cancer is 97%. I’m clinging to that. That’s my light at the end of a very long and arduous tunnel I am facing now.
Silence = Death.
So while not totally the dramatic cause of the AIDS scare back in the 80s, I do see how that phrase means so much more to our community. It’s a bell-weather, a marker, a flare in the sky to remind us that we must be forever vigilant in keeping our voices out there. So while I step back, while I regroup and try to get better and hammer cancer back to the 9th level of hell where it came from, I call upon all of the authors, singers, queer content creators to step up and keep things rolling for Vance and Jayne while I find my way back to you all. Sign up for eps, encourage your author pals to do the same. Or if you know of singers, musicians, poets (GODS above, I would love to have a show on queer poetry), screenplay and playwrights – please get them to sign up for an episode.
With the current administration, we are at the precipice of our voices being silenced once more. And we can’t have that. We must not remain silent and think things will maintain the status quo. Because as I’ve learned from personal experience, you can’t remain silent. That silence might just very well spell death.
Until next time (and there WILL be one) …