Brandy Lien Worrall-Soriano

How many prayers, how many times I’ve begged and begged and begged for mercy, 

     how much will that pitying relief yield me in the end, when unrelenting pain is all that keeps coming down this maze of twisting suffocating sheets, like a noose around my neck, if only.

I’ve fantasized about some such accident that will release me gracefully out of this damnedable place, and what did I do to deserve this, other than be born,

    is all I could figure out, and maybe a hundred little white lies to my doctors about bowel movements and blood work and how long I wait after I take my Synthroid in the morning before I have my first cup of coffee.

Chronic as the days and nights are long, and I can’t manage to find that sweet spot, no matter how hard I try, it eludes me like an orgasm eludes a lot of women, even after all those years and women’s magazine articles with advice telling them how to achieve one.

My elderly Asian mother—whom everyone seems to think is cute—tells me on the phone that all this pain is my fault somehow, none of it hers, because if anyone is to blame, and trust me, someone is, it’s me for being a lazy smart dog, and not the doctor-kind that’s rich and takes care of her. Asian parent guilt is as relentless as my chronic pain, and will drive anyone just to the brink of madness.

There is no pill right now to help me with my affliction. The only thing to soothe me would only hurt the ones I love. 

So I endure. And hope for a better today, tomorrow.

I normally don’t post comments—good or bad—from anyone, but I feel this is a perfect illustration and actually an excellent lesson/learning experience as well. In the wee hours of the night, as I  was studying for midterms, I got a notification that I had to moderate a comment on my latest blog post, “Into Existence.” 

Here’s the comment, with the email address included (I will explain my rationale for the inclusion later): From nancy.hesby@yahoo.com, 10:36 PM: “As usual, you are very negative and completely self absorbed. Your poor children can’t even graduate high school without some self pitying diatribe from you.”

Of course, when I first read this, I admit I was hurt and confused, and even shocked. Then I burst out laughing because whoever this individual is, they obviously have no idea about the unbreakable bond between my children and me, nor do they realize that my kids and I share our artwork—whether that’s writing, visual art, gaming storyboard, or music—on a whim or scheduled. That’s how we’ve been since they could walk.

The timing of this comment could not have been more perfect because my youngest had confided in me yesterday before school about some microaggressions and was asking me how to deal with them. Having a plethora of invisible disabilities and being mixed race, I’ve spent a lifetime building my toolbox and in fact provided her a real-life example of how I had dealt with a microaggression in my biology class the previous day. Bottom line, I told her, you straighten up, look the person in the eye, and without judgment, you tell your story as a way of educating. My late father taught me this very lesson early on in life, when I’d experienced racism on the first day of kindergarten.

Thus. Bullies—even cyber ones—do not like to be called out. I don’t know exactly who this person is—for some reason, I picture Santa in drag with bad collagen filler, bleached blonde hair, with an Eastern European accent (it makes the bully seem even more ridiculous, which look, the bully is fucking schtupid, in the British pronunciation—and the only filling this mama will ever need is pie lol). Many times, they are textbook narcissists who crave attention, gaslight the hell out of everyone, lie their asses off (it’s pathological—they can’t help themselves), and bully their way through life while blaming everyone for the the bullying—and best of all, they hide in plain sight. They make themselves out to be victims while creating victims out of everyone else. So best way to deal with these sorry-ass troglodytes? CALL THEM OUT. And that is why I include this person’s email. No, I did not approve this comment on my piece, which was my commencement song to my children. This comment was an attempt to bully me, and it bears no merit on anything I had said.

However, I tried to reach out to the person, who had made the comment because I felt they were hurting, and that clearly I had personally done them wrong in some fashion. But the email had bounced. Is this person really *Nancy Hesby*? Or did this sad, pained individual just choose some random person and attach an email to her name, in an attempt to hurt me, not knowing that I have survived a hell of a LOT more than this sorry-ass paragraph and therefore couldn’t even be dinged by this? In any case, I responded:

“It’s actually a pity—and sad—that YOU view my piece in this light because it is meant to be one of hope and faith after all that we, as a family, have endured all these years. So in the end, your read is truly totally ignorant. 

‘As usual…,’ why do you lurk in the loneliness of the Internet and despise my expression of how I’m trying to regain my life and have gratitude for moments big and small? I feel sorry for you, and I pray you find help, peace, solace, and serenity. 

Sending you light and love, Brandy Liên Worrall-Soriano”

Unsurprisingly, the message came back undeliverable. 

Well, “Nancy,” if you’re reading this, I wish you all the best, as I’ve said. Please stop being a lonely troll. I’m not here for that, and you know it.

As I was pounding the pavement on this rainy Vancouver afternoon, heading to my community college campus—doing my best as a mature student, doing a 180 on careers at age 46 and going from editor and writer of nearly a quarter of a century to applying to nursing school so I can do some positive good and use my 15 years of pain and misery as a cancer survivor and chronic illness patient—I suddenly burst into tears. It had hit me. I was able to check off a bucket list item: I saw my child graduate from high school. (You must forgive me, people sitting and standing around me here on campus, for I’m allowing the tears to fall as I continue to pen this now.) For me, you must realize, watching my baby boy nervously, tentatively wobble and then proudly straighten up to his full 6’1” self, to walk across the stage, shaking his principal’s hand, being alphabetically frustrated as the next to the last student—it means more than just hypothetically leaving the nest (I say hypothetically because this one is still living with us after graduation, natch). 

As a cancer survivor, as a young adult cancer survivor (I beg of you to look up stats on this egregiously underfunded, yet depressingly burgeoning cancer community, both in the States and in Canada), there are so many fears. Yes, in 2009 I found a community when I became part of Young Adult Cancer Canada and Young Adult Cancer Network (at Callanish, a Vancouver cancer nonprofit nonpareil, which will always be embedded in my heart and soul). Through these organizations I discovered incredible connections, friendships, people who got “it,” love, spirit, memories. There were retreats, conferences, workshops, outings, meditations… But the downside is that I have lost so, so many friends. Many of those friends had children who will never grow up with their mom or dad anymore, much less have their parent at their graduation. It’s been beyond heartbreaking…I’ve felt like my heart literally had developed scars, over and over again. I think of Jennifer and Julie, both with my rare subtype of breast cancer (Triple Negative Breast Cancer) that often takes the patient within five years of the diagnosis. Each woman had small children. Each were amazing mothers, sparkling humans.

During the last (almost) 15 years since my diagnosis (it’ll be 15 on July 12th), I’ve had so many cancer scares that were not unwarranted—pains and lumps and even a mounting concern that led to a lung dissection, leaving me with minus one-third of my right lung. Then my father suddenly passed away from metastatic lung cancer in 2014 just a couple weeks before his 66th birthday … my aunt from pancreatic cancer in 2018 when she was 68, and my mind lingered on how I have had so much radiation…radiation that continues to harden in my body and will possibly mutate cells someday. Alas, at some point I stopped having cancer scares and began having hopes to live at least until I see my two older children graduate from high school, to live until 50 years old (three and a half more years to go!), to see my youngest graduate from high school. Being a grandma is on my bucket list, but I dare say that might be a bit greedy.

The pandemic stole my darling first born’s walk across the stage in front of a big crowd last year, and all we got was an emailed video. It would have been grand to see her, especially receiving her accolades for her hard work on the yearbook and as a graphic designer. We joked that she should have donned her cap and gown, and slyly locked arms with her baby bro to walk across the stage. Because that’s the kind of family we are—hilariously loving (those two kids have NEVER fought!)

I myself have been part of four commencement ceremonies: high school, Bachelor’s, Master’s, and MFA–my parents travelling long distances (even from Pennsylvania to California) for all but the last one. Institutions choose different words for their ceremonies to mark the occasion. As a self-proclaimed word nerd, I’ve pondered the nuances of “graduation” and “commencement.” Graduation indicates the process and journey of taking steps to obtain a degree or reach the endpoint. Commencement, on the other hand, marks the beginning of the next phase, or even better, from the late 13th century, “coming into existence,” as the student has attained all they need to transition fully where they want to go. Unfortunately, my son’s high school woefully chose the words “Leaving Ceremony” to grace the program. Who made this, um, thoughtful choice is beyond me. In my opinion, they might as well have written, “GTFO Ceremony”…it would have been at least funny. Like, just leave already, kiddos!

Prior to my son’s graduation, I read about a father who went to his child’s graduation and decided to clap and cheer for every single student because he knew that not every kid had that kind of cheering section, and he wanted to make sure that each kid felt loved. I felt where this parent was coming from, his sense of urgency of the last two years, the do-any-small-thing-you-can to show these kids you care because you never know if it will be the last day for any of them, those isolated kids who felt so lost that they couldn’t take it anymore. I realized that since the dawn of the pandemic, with social rules changing faster than viral trends, how many parents were now grieving the loss of their children. Never taking a single moment for granted, I dedicate this commencement homage to all the parents and children who can only imagine what might have been. 

At the beginning of the ceremony, the guidance counselor instructed the audience to hold their applause until the very end of the ceremony, to make it all go faster. No one listened. I mean, I was already embittered by the fact that they made us wait outside for nearly an hour for no good reason, after letting in some folks almost an hour earlier–angry blisters reddening and swelling on my toes and soles, Fluevog Rockstar heels be damned. And I could only make so much civil chit chat with my ex-husband while standing in line with the tickets. So yeah, if I wanted to cheer and hoot and holler for each and every student, you bet your ass I was going to.

I observed and enjoyed the fact that each kid had their own way across the stage because this was their moment–after 13 years of public school education, a journey of highs and lows, of failures, achievements, tears, laughter, secrets, proclamations, friendships, enemies, frenemies, loneliness, and togetherness. They emerged from behind the curtain beside the guidance counselor, handing him the slip of paper with their name on it and their one-liner–how they wanted to tell the hundreds of people in the audience, and their loved ones, who they were, who they’ve become–the culmination of their identity, in one line, their “coming into existence,” as it were. Some kids swaggered, others did tricks, some tried to be funny in their nervous way, but the majority just wanted to get through it, shyness mixed with a mustering of confidence that was sweet to behold. I can remember that feeling.

Finally, it was the moment I’d been waiting for for over two hours. My baby boy–almost grown up. He ambled to his spot. From his birth to his toddler years to kindergarten through elementary then high school–it all rushed at me in my mind as a bittersweet montage. He nervously stood there as his guidance counselor read his name and began reading his one liner–an eccentric, offbeat thanks to the crows he fed and spent time with after school. I cheered loudly and felt my chest fill with so much overwhelming emotion as he made his way across the stage to where his principal stood. I desperately wanted to go to where he was, to catch him if he fell, as I’ve done so many times when he was little. But you see, I can’t do that anymore. He must now learn how to catch himself, pick himself up, dust himself off. He knows I will always be here to listen to him tell me all about it. And maybe someday, if, when I’m not here, I’ll be with him just the same.

My second waking hour at Lee o’clock
in between consciousnesses where dimensions defy shape and time, therefore mortality even the word
               so you and I are forever without regret 
still at the thought my heart breaks 
And I am i
And I am awake. 

With Regret.

Quality of life. At age 45, most of us take those words—that concept—in our own lives, for granted. Sure, as we reach middle age, we begin to notice things like grey hairs, sore backs, slower metabolisms, and other symptoms pop up, but for the most part, our quality of life doesn’t suffer too much. We can still walk, talk, hear, see, go to the gym, work, enjoy time with our family and friends, go to the movies and concerts, eat whatever food we want. Life is fine.

For myself, the last three years had been lacking quality of life. I had not been able to eat at all, as I had trouble swallowing, and the food that hit my stomach caused intense pain immediately. My lowest weight was 87 pounds. I had seen countless specialists after being on lengthy wait lists, enduring painful procedures and paying for pricey scans (scams—avoid Prenuvo!). I had been abused and traumatized in different ERs, taken so many tests and labs, my results dismissed and diminished, my symptoms ignored. At one point I was going blind, deaf, suffering from aphasia, couldn’t think. My face and neck were numb. I was having tonic clonic seizures. The pain was beyond a 10 on the pain scale. I was using a cane and mobility scooter because I could barely walk.

Because my parents had been exposed to Agent Orange in Vietnam, my symptoms were common with my Vietnam Vets children cohort. I did a lot of research on their illnesses in order to figure out what approach to take with my symptoms. I knew that the searing pain in my pelvis felt like my pancreas burning. Sure enough, one of the tests from the ER visit showed pancreatitis. Yet I was gaslit when I brought this up.

Luckily I have two girlfriends whose fathers were also in Vietnam. We help each other with our illnesses and symptoms. One girlfriend, also named Brandy, is fortunate enough to be part of an extensive genetics study through the University of Colorado, as well as has an amazing Ehlers Danlos (EDS) physiatrist. She often guides me on how to approach my practitioners effectively. She suggested that I ask my pain doctor to refer me to a physiatrist to help me with pelvic pain associated with EDS.

I did some research and found Dr. Heather Underwood, here in Vancouver, a physiatrist who knows about EDS! I asked my pain doctor about her, and he knew her as well and was happy to make the referral. However, it would be a long wait—9 months. It was well worth it.

Meanwhile, I was still struggling with debilitating weight loss, pain, and other inexplicable symptoms caused by autoimmune inflammation. In May, one of my classmates from the Asian American Studies Master’s program from UCLA 20 years ago, who had become a nurse practitioner, reached out to me. He has been following my health story like many others and wanted to offer his help. We arranged a Zoom call to discuss my medical history and health goals. First, as a nurse practitioner himself, he expressed disappointment at how I’ve been neglected and dismissed, as I told him some particulars. Then, after I described my symptoms and diagnoses, he suggested I try low-dose prednisone (5 mg) for a month to bring down the autoimmune inflammation, stimulate appetite so I could gain more than the 92 pounds I was at and keep it on (I had been stuck there for two years), gain more energy, and see where that took me. I happened to have a bottle of prednisone from when I began Accutane but didn’t take any of it.

After a couple weeks, I gained 8 pounds, I walked a mile for the first time in three years, I had less pain and more energy. I started having quality of life! My sleep wasn’t affected since I took it first thing in the morning, and it was such a low dose.

Knowing that steroids aren’t something to be messed with, I started researching side effects. Bone loss is the main one, and since I have osteoporosis I have to watch out for that. Also, it affects blood sugar, and I’m pre-diabetic. But I get tested for these things regularly anyway. What I’ve weighed is the fact that I now have Quality of Life—something that I’d been lacking for years!

The benefits continued increasing. I was responsible and spoke with all my doctors and specialists about prednisone. Finally after much consideration, my pain doctor gave me a three-month prescription.

I now weigh 110 pounds, walk 3 miles a day, and am trying to get a full-time job. I am digging our house out from the pandemic rubble and reorganizing it completely. Now that the children are much bigger, I’ve sifted through their stuff and donated 20 large garbage bags of clothes, toys, and miscellany to Big Brothers. I’m planning another pick up soon.

I can’t say I’m getting that much sleep, as I’m always thinking of something I want to do. I’m not taking this rebirth for granted. Every waking moment is spent on reading, writing, watching movies and tv with my family, going out with friends, snuggling with my boo, feeling great in my new skin. There’s so much living to do! I don’t want to miss a single moment.

It’s been a long time since I’ve written and shared, and the reason is a common one: a lot has happened, and it hasn’t been good. I’m in the middle of the healing process, and writing AND sharing will have to be one of my medicines. Sharing is key. I cannot exist in a bubble because isolation can become a dangerous symptom for me.

One thing I ask now of you, my readers, is that you consider purchasing my first memoir, What Doesn’t Kill Us, from Amazon, for yourself or for someone who might find a connection to it (a cancer patient or survivor, or someone who has experienced intergenerational trauma, for example), and if you read it, please leave feedback on Amazon or Goodreads. This will help encourage me in continuing to write my second memoir.

So here’s the beginning of the draft of my second memoir, a peek into what I’ve been working on. Please be gentle.

***

It’s 3 am west coast time, 6 am east coast time, and I’m in-between at 5 am in the air. It’s dark with a hint of gauze. I need to get some sleep, or I’ll be having a seizure at the most inconvenient time—not that there’s ever a convenient time for your brain to decide that it’s time for a rave. Dad has been admitted to the cancer ward at the VA hospital. I just can’t sleep. So this is what it’s like to be on the other side.

***

Driving with Mom in the car. For two hours. Each way. She talks nonstop. It’s not like she has a ton of content. Rather, it’s that she pushes the same buttons over and over and motherfucking over again. For two interminable hours. She’s talking so much that she gets us lost. She’s been telling me this whole time that she knew for sure where to go. We ended up at a 7Eleven across from a barn because I figured that just maybe there might be cell service and wifi here in this spot in the middle of nowhere, and I was right. I plugged the Lebanon VA Medical Center into Google Maps, memorized the directions, and took a screencap just in case. And I told Mom to refrain from giving me anymore directions. She hasn’t.

We pull into the parking lot. Do all VA hospitals look the same? Some drab muted shade of gray against brick. It’s all so depressing. As it should be, I guess.

Mom and I step inside and keep going down the narrow hallway to the elevator. Fourth floor—Camp Courage. I wonder what the other floors are called, or if the cancer ward is the only one that got stamped with a moniker straight out of the boy scout’s handbook.

“Hi, we’re looking for Walter Worrall. I’m his daughter, and this is my mom,” I say to the nurse.

She smiles and tells us to go down the hall to room 421. Mom and I find Dad’s room, but he’s not there.

“Can I help you ladies?” The man sitting in a wheelchair in the hallway is watching us. How long has he been sitting here, just waiting for something, anything to happen?

“We’re looking for my dad, Walt.”

“He’s in the lounge. You go around the desk, and you’ll see it. They have cookies and coffee in there.”

“Awesome! Thanks for the tip. Nice to meet you,” I say. “Come on, Mom. Dad’s down there.” I hold onto her arm and lead the way.

Sure enough, there’s Dad, laughing with his new buddies.

“Hey, Dad, are you behaving yourself?”

He gets up out of his chair and gives me a hug. Even though he’s still softly plump, I can feel how frail he is.

He introduces me and Mom to his two friends. “Man, listen, this is my daughter Brandy.” The guys nod and smile. Dad continues, “She’s been through the shit too. She had breast cancer.” The guys give sympathetic looks. “But she lives in Canada. So she got big tits out of it for free.” Dad bursts out laughing.

Oh my god. Well, he said it. I laugh too. The guys look super uncomfortable, which makes me and Dad laugh harder. Mom laughs too, though I’m pretty certain she has no idea why she’s laughing. So the guys finally join in, while trying very hard not to look at my boobs. Welcome to Camp Courage.

Let’s pretend this is fiction.You don’t know the person I’m talking about.

He’s not your colleague, brother, son, father, best friend.

I’m an unreliable narrator anyway, I’ve been told.

The evidence I presented was a pile of 80 pages worth of words and code

that went unread. I looked at that pile after this fictitious lawyer 

set it aside and said out loud that he wasn’t going to read it,

said silently that it was because my children and I were not worth as much 

as what his client was paying him.

I wish my story already had an ending and that it could be short,

but neither narrative element is possible right now.

The story is that I am the protagonist.

It’s that I’m a female writer of colour and mixed race. 

That I’m a reluctant survivor.

That I am a storyteller because I want to make a difference,

But sometimes I am also scared and ashamed.

I tell stories more than I write them.

A spoken word doesn’t have to last as long as a written one,

Unless otherwise documented.

Spoken words are ephemera.

Lived experiences are ephemera.

Typed words, audible breaths on video, are forever.

Forever. Once you associate that word with your trauma,

It sucks the air out of you. You forget to breathe. Then you’re breathing too hard and choking on air.

My character has many holes and weaknesses including but not limited to: mental illness, dysfunctional family, substance issues, being an outspoken “you’re either with me or you can fuck off” type of gal (at least, back in the day), etc., but her biggest fault is that she hates lies and betrayals, after she defined what that meant to her. As much as she always wants to tell the truth, sometimes she is afraid to.

Because boys will be boys

Because Chinese men are like that

Because you look too old and he’s always around young girls so especially because of that, it’s not his fault

Because he has a penis.

We’ve heard these stories too often and when we try to tell them

We are not believed.

Remember, this is all fiction. This never happened to me.

Simple writing challenge: Write about y/our America. Here’s mine. Post yours in the comments.

This is NOT your America.

For those of you who think you’re taking America back, this is not your America.

For those of you who think you’re going to make America great again, this is not your America.

For those of you who don’t understand why “Black Lives Matter” needs to be said, this is not your America.

For those of you who want to build up a wall and close off the doors that your ancestors once came through, this is not your America.

For those of you who want to ban brown people whom you think are terrorists from the countries where you get your oil, this is not your America.

America is for people who uphold the founding of this country–who acknowledge that that founding was tied into a genocide, who want to make right all the wrongs, who want liberty and justice for all, not just for White Christian anti-women’s rights bigots.

America is for people who believe that beyond their nationality, there is a bigger purpose called humanity–and an equality within that realm.

America is for people who believe that human rights are human rights, period, no conditions, ands, ors, or buts.

America is for the compassionate. America is for those who help others because that is the right thing to do and not just because their Bible tells them so.

The America that you want–the one fraught with bigotry and hate and exclusion and separation–that America is going away. That America is going to be extinct. That America is obsolete and dead. That America is NEVER going to be great again.

I echo words that people have said to me in response to my protests and words of resistance and opposition: If you don’t like my America, why don’t you just leave?