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Brainflowers

Brainflowers

"All God does is watch us and kill us when we get boring. We must never, ever be boring."

Chuck Palahniuk

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CONTENTS

Chinese New Year 2010

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Not the Chest Surgery I Wanted

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It's Not Brain Surgery

Wait, yes it is

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It's Not Enough

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Yes, Mom

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The Intersection of Magic and Magical Thinking

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(interlude: longest episode of project runway ever)

 

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Recovery, Vacation, Lost Wages and the Fine Line

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Racing From the Cure

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This Is Still Not the Chest Surgery I Wanted

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CYA

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Chinese New Year 2011

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CHINESE NEW YEAR 2010

CHINESE NEW YEAR 2010 Just before the Year of the Tiger began, I had a biopsy

Just before the Year of the Tiger began, I had a biopsy on a lump in my breast.

I'm a transgender man. I don't even want to have breasts. Up to this point I'd had fairly mild issues with my body, but this blew them wide open.

I didn't talk about it. My girlfriend knew, obviously,

but I didn't mention it to my friends or family - not

when I went to the first doctor, not when I went for the mammogram, not when the doctor called back and said they wanted more pictures and a biopsy.

I felt like my feelings aren't something I should

subject other people to, because other people deal with worse, because I'm telling myself it'll be nothing.

In the meantime, I felt like a scared little boy who's supposed to man up about shit. I grew up in a family that Didn't Talk About Things. Especially serious things. I don't want to be the person that everything thinks is looking for a pity party, and just thinking about it had me so damn scared that I couldn't think straight half the time.

That's what I get for being queer and bi, right? The inability to think straight?

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NOT THE CHEST SURGERY I WANTED

I don't hate pink. I don't have any strong feelings about the color either way, but I do have feelings about what it stands for. When I wear a pink ribbon, when I do the Race for the Cure, it's for my mom. Pink is for my mom, not for me.

So it was awkward to sit there, staring at the tastefully-pink decor and the matching pink front- tying hospital tops everyone was wearing in the waiting room of the evocatively named Breast Center, and be so painfully aware that I was the only man who was waiting for an appointment, and the only one who knew that a man was here at all. I didn't correct anyone when they called me "miss" - it seemed too much to explain that here. Everything seemed too much and too fast that morning.

As it turned out, I was the youngest person in the waiting room too - there was a young woman whose mother was waiting for her, but she was in her early thirties. I found this out when two of the waiting women responded to the same first name, and after the nurse took one back, the other started telling stories she'd heard of mixed-up test results and accidental mastectomies. The young lady who'd been with her mom was horrified, and the elder one began

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to speak to her in a motherly way. I learned her age, and their histories, as they spoke.

I felt awkward, in my pink hospital top, surrounded

by pink decor. I couldn't take my usual small relief in ungendered bathrooms. I couldn't even bring myself to talk. Female bonding, even this desperate kind, still didn't include me.

I felt even more awkward when they called me back

to the mammogram unit and I had to take the top off.

I overanalyzed myself even as the radiologist

analyzed me. Was I too hesitant to take the top off, or too eager? I was aiming for detached, but I never

quite got there.

To have these breasts shoved onto a shelf, squashed flat and photographed, then sent off to ultrasound

where they were rubbed and scanned

to a part of anatomy that I barely felt belonged to me.

And all the time I was surrounded by women.

I was reduced

I'm sure that's a comfort to every other patient, but it was just another thing that held me apart from them. The nurses, the ultrasound technician and the doctor, the radiologist and even her student observer were female. I don't begrudge them their comfort, but it definitely canceled out every time I've passed in the last six months.

While I waited for the doctor's recommendations, all

I could think was the same horrible joke about

getting my insurance to cover my top surgery.

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At the end, when the doctor left me alone to get dressed and find my way out, I cried. I wasn't sure what I was crying for, and I hated myself for crying almost as much as I hated this body. I don't usually hate this body, even if it is so vastly wrong to me. Usually there is only indifference, maybe some discomfort. That day I really hated it.

The bitterness stuck around, a thin trickle making me a little sick to my stomach, making me cringe every time I put on a sports bra. It was a couple of weeks before they could fit me in for the biopsy, and that was much the same, but I was prepared for it that day.

There was relief later, in the word benign, but it didn't quite undo what everything else had done. It was a different kind of relief. The doctors recommended surgery anyway, just a precaution, and so the knowledge that I had to go back there and keep dealing with this was still hovering.

The third time I went back there was the morning of surgery. Just a precaution, I repeated to myself. So I went back again to the little pink tops and the pink walls. This time there was only one woman in the waiting room, this one much older than me. She talked about her church, and how late they were running today. I joked that at least they couldn't start the surgery without me.

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She asked if she could pray for me. I said yes. I never said yes, but that time I did. She closed her eyes and prayed for me, even as she was facing her own trials. We all knew that everyone in the damn pink shirts was here for a reason, after all. She even gave me a little book when she was done, with her own name and number written in on the back. In case I needed to talk, she said.

I could have cried for it. Did cry, later in the day while

I waited for the doctor in pre-op, when everything was finally too much for me to handle. I couldn't explain why, hardly to myself and not at all to other people. There was too much wrapped up in it.

I woke up in recovery with a stiff neck. That always

happens when I sleep wrong. My chest hurt, but my throat hurt more, and I gagged and choked. I'm grateful for it, in a way. As long as my throat hurts, I don't have to think about what else does.

The doctor mentioned sending the remains to a lab. Just to be sure, again, even though the biopsy already came back benign. That was another week, still, and the bruising and the scar, before I can try hard to get back to not thinking about the parts of my body that shouldn't be there, that aren't part of what's really me.

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IT'S NOT BRAIN SURGERY WAIT, YES IT IS

Sometimes when you jump, you're a lot higher than you thought. Sometimes fate catches you by the scruff of your tshirt.

I almost quit my job in July. I'd been thinking about it

for a while, because I really disliked it and I wanted to go back to school full time. My girlfriend said she would get a part-time job, even though I'd wanted to be able to put her through school without her having to work. She said she was happy to do it because my job stressed me out so much.

She started looking, but nothing much turned up because of her class schedule. I put off quitting because I didn't want to do it until she was employed and I was sure we'd be okay, mathematically speaking.

I told my supervisor and my boss that I was going

back to school about a month before the semester started, and offhandly offered to stay on part time if there was a way to make that work. I expected an immediate "no," to be honest, but it never came. Instead it was weeks of "we're waiting on someone" and finally I decided I'd quit after the business trip I was already scheduled for in late July.

Then I had a vertigo attack right before I was supposed to travel. It was the worst I'd had in a while

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and I knew I couldn't fly, so I went to urgent care on a Sunday night since I was supposed to leave in the morning. The doctor there wrote me a note, but she also instructed me to go to my primary care doctor and ask for more input on the vertigo than the offhand diagnosis of Benign Positional Vertigo I'd gotten before.

I did as she'd told me, and my primary care physician said sure, but first let's get an MRI done. Just to be sure. And meanwhile I made plans to leave my job anyway, figuring I'd find something else and skate by on my student aid.

So I worked up my nerve and I told my boss I was going back to school the next week and if they didn't have an answer I'd have to just quit.

The day I'd planned to say I was definitely quitting, my doctor told me there was a brain tumor on the MRI results. The day. And so I negotiated, and I got my modified schedule, and I took my paycut but I kept my insurance.

There's a lot of things about the year that scare me, and one of them is the idea that Someone is looking out for me.

You know how people say things like "I went numb" or "I stopped hearing even though I knew they were still talking"? It was exactly like that. I almost dropped my lunch as I was carrying it to my desk.

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Words. She said words. That's really all I can tell you.

I called my girlfriend and then I spent twenty

minutes crying in a storage closet in my office.

A week later, I got a call from the doctor while

waiting for the bus. The second set of MRI results

showed a definite Problem and she was handing me off to a neurosurgeon. My doctor asked if I was okay.

I told her yes, because I have to be okay.

It was starting to mess with my head a little (no pun

intended). The doctor told me to go to the ER if I had

a seizure or severe vertigo or a bad headache, "just to be safe."

My first consult with the neurosurgeon went about as well as a consult with a neurosurgeon can go. He said the tumor looked benign and probably slow-growing and congenital. Operable.

Later that day I told my girlfriend I was oddly relieved, and she asked why.

If I had to have a brain tumor, I told her, I'd ended up

with one of the best possible options. Brain surgery wasn't fun, no, but the doctor expected me to be out of the hospital in less than a week and back at work in a month. Compared to the people I'd read about online who spent months or years recovering, yeah, I felt lucky.

It's all relative.

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IT'S NOT ENOUGH

IT'S NOT ENOUGH Because I am a geek, my first thought after diagnosis was google. Some

Because I am a geek, my first thought after diagnosis was google.

Some good information came up, including a mailing list for people dealing with brain tumors. I joined and planned to post an intro after a couple of days, when I had a feel for the group.

Most of the posts on the list came from family members and loved ones, not the patients. This was largely because the situations being discussed were much worse than mine cancerous, fast-growing tumors, people with major delays in recovery and all sorts of mental impairment.

I often end up feeling like my situation is not

"enough" - I'm hard of hearing but not enough that I feel it's fair to call myself disabled, I'm prone to depression and anxiety but not enough not to feel like I'm whiny and appropriating when I talk about it, and

so on.

So after a few days, I realized I'd joined a mailing list for brain tumor discussion, and then found myself thinking that my situation wasn't bad enough to participate.

I never did end up posting on that mailing list, but I

like to think I've learned something about owning my

illnesses.

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YES, MOM

To top everything off, my mom messaged me on Facebook to ask me how the MRI results were, and I told her on there. I feel like a dick but it's fair if she asked, right? And in tried-and-true, my-avoidant- family fashion, she immediately changed the subject.

My dad called me the next day to ask a bunch of questions I didn't know the answers to. I kept waiting for him to say that he or my mom was going to come out to see me, but no.

I called my parents as soon as I got out of the surgeon's office with the details. Mostly all they could keep saying was how they wished I was closer to home. No reassurance, no offers to visit. My family has never been particularly good at dealing with bad news, but this was ridiculous.

THE INTERSECTION OF MAGIC AND MAGICAL THINKING

I'd been prepared to hear all kinds of things. I was hoping for "I made you an appointment with an ENT." but I was prepared to accept "There's something structural in your ear causing your vertigo." Hell, I could have taken "There's some odd lesions on your brain" - my sister has lesions that apparently do nothing, so I could deal with that.

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But no, I got "brain tumor." Then it was one thing after another. I had to wait for another MRI. I had to wait for the results. I had to wait for a neurosurgeon to look at it, I had to wait for my consult, and then I had to wait for the surgery. After five years with the vertigo and eleven since I first saw a neurologist for migraines, it seemed like a terrible rush.

While I was waiting for the surgery date, I was a mess of obsessive thoughts and magical thinking. I can recognize them now, and they can even be a relief. A solid, magical-thinking-based reason why I have to be okay, or an obsessively distracting line of thought, can get me through the days. I'm not proud. I'll take what I can get.

It's ironic, but I find myself disappointed in my sound logic. Magical thinking used to go farther. Since I started working through my obsessions, I can reach the magical conclusions but they just don't stick the way they used to.

but they just don't stick the way they used to. That should be a good thing,

That should be a good thing, but my coping

mechanisms are there for

a reason and every time I break down a wall, the anxiety flows back in.

I found myself falling back on it as I prepared for brain surgery. I found myself playing solitaire obsessively for hours,

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because as long as I won I would survive.

For the first time I was able to see what I was doing as I did it. I understood why I was thinking these things, even if I couldn't stop myself from thinking them.

And in the process of becoming aware of the magical thinking, I'm having a hard time with magic. I can believe in what I've seen, but I have a hard time extrapolating from that. Honestly, what I don't have? Is faith.

My girlfriend said she knew I'd be okay. My mom said trusting in Jesus is what got her through her cancer. And I just wish I could give myself over to that.

I've gotten so used to thinking something and not thinking it at the same time that I'm second guessing my own experiences, those of people I trust, things I know are true.

I don't trust myself - and how can I? My brain is

broken. My lungs are broken. My digestive system is broken. My knees are broken. My inner ear might still be broken. And on top of everything else, the gender's

wrong too.

As corny as it sounds, I feel like I can't have faith in other things because I don't have faith in myself. And

I don't know how to get there from here.

Instead, I tried my best to put the whole thing aside and just keep doing what I could. I went to work. I went to school. I wrote and I painted and I chatted online. I went to see the Green Day concert I'd

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scheduled the surgery around. I went into the hospital for pre-op blood tests and x-rays and more MRIs.

And then, almost before I knew it, it was the day of the surgery.

(INTERLUDE: LONGEST EPISODE OF PROJECT RUNWAY EVER)

I spent most of the day after surgery in the ICU. Late in the afternoon they moved me into a regular hospital room. I was still hooked up to a bunch of monitors and IVs and not entirely conscious. My girlfriend was there all day, but I wasn't able to follow a conversation, so I mostly kept the TV on. I came across a Project Runway episode and left that on, since I generally enjoy that show.

What I didn't realize was that they were showing a marathon of several episodes leading up to the new one. I was half-awake and waiting for a post-surgery MRI that I fully expected to be miserable. I kept nodding off and waking back up again for hours, but I thought I was only briefly closing my eyes because, well, Project Runway was still on. My poor girlfriend didn't have the heart to explain to me how long it had actually been until later.

was still on. My poor girlfriend didn't have the heart to explain to me how long

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RECOVERY, VACATION, LOST WAGES AND THE FINE LINE

I spent almost a month off work after my surgery.

This required a mass of paperwork before, during and after the leave of absence. I checked I had to make arrangements to pay my portion of the insurance during the weeks I didn't have any pay for the company to deduct it from. I can't complain about this when my sister went on medical leave a few years ago, she had to cover her entire insurance payment while she was

had to cover her entire insurance payment while she was out. I had a panic attack

out.

to cover her entire insurance payment while she was out. I had a panic attack about

I had a panic attack about bills before I even left the hospital. Once I returned home, I carefully tracked how long my strength lasted while checking the remainder of my savings between bills.

In the end, I asked the surgeon to clear me to return to work early. I did feel fine for the most part, but my real motivation was not whether or not I was 100%, but how much longer my savings would last.

I had to borrow money from my parents, which I hate

doing. Not long after I came home from the hospital, my girlfriend finally landed a part time job on campus that would work around her classes and her required

internship.

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Even then, we just barely scraped by in October, November, December, and into January. There was no margin for error. More than once I thought we were about to be caught up and one tiny thing set us back again.

I had all the things you're supposed to have insurance, a job that qualified me for FMLA, a (small) savings account, a supportive family, and hardly any unnecessary spending I still came very, very close to losing control of my finances. If I hadn't been able to return to work when I did, or if my girlfriend hadn't been able to find a job, we would have been much worse off.

It doesn't surprise me that medical bills are the number one cause of bankruptcy in the US. My insurance covered a lot, but I'm still arguing with them and the hospital over part of my bill. If I had to deal with hospital bills on top of trying to make up for any more time off work? It would not have been pretty.

Stories of people who destroyed their lives trying to keep insurance, or who died because they didn't have it, are depressingly easy to find.

In yet another questionable definition of "lucky," I managed to skate by without getting too far behind. But it's a hell of a tightrope walk, and if you fall, I know it's a long way down.

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RACING FROM THE CURE

Six years later, I was in the grocery store with my girlfriend when my mom called and told me she had breast cancer. I held it together until she hung up, and then I cried all over the freezer section.

My mom and her sister are six years apart; they both were diagnosed at the same age. Somehow this turned into a belief that I wouldn't have to worry until that same age. And by the time I was forty- something, it would be cured or at least minor, right?

And then I found the lump at twenty eight and that went to hell.

I was supposed to be doing the Race for the Cure with

my officemates again this year. I couldn’t because I was still recovering from brain surgery, and I was disappointed about that. I hope to be out there again

next year.

But in the meantime, all I can see is pink everywhere. I've seen cancer-battling kitchenware, cookies, and

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shopping bags. During October in particular, the grocery stores have huge displays of cancer-themed food, and I do not have words for how much I do not want to think about my latest mammogram results while I'm picking out dinner.

I had my six month follow-up mammogram the week

of the Race for the Cure. I don't want to think about breast cancer all the time; it's exhausting. But I'm being told I'm betraying my mom and my aunt, and maybe that I hate women, if I don't either support it loudly at every opportunity or explain why every time. I'm tired of explaining, and I shouldn't have to.

I'm getting numb to the pink. My eyes just gloss over it. For me, that's a plus. But I wonder if the sheer volume of pink isn't overwhelming other folks too. You look at the pink paring knife and you wonder

what percentage is going to actual charity, and you're

a little more cynical the next time the pink comes around. And it does.

And then there are the fundraisers - save the boobies, save the ta-tas, and the local radio station doing "bras for a cause" without explaining in what way a wall of underwires will destroy cancer cells. My mom's breasts were not saved. She had a double mastectomy with reconstructive surgery. Does that mean she failed, somehow? Did society? If we'd just been more aware, would she not have needed that

surgery?

If she hadn't had that surgery, she might have died. So to be honest? I say fuck the ta-tas. Save the women and men with breast cancer.

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THIS IS STILL NOT THE CHEST SURGERY I WANTED

When I went for the six month follow up on my first chest surgery, they found some new spots. I had another (negative) biopsy. The doctor recommended the same surgery and then yet another follow up.

Because I needed something to look forward to along with my yearly MRI.

I asked about having a mastectomy, but the surgeon said he couldn't sign off on it yet. He did say that if it happens a third time, he'd be willing to discuss it. That's an improvement. I don't want to keep having surgery every eight or ten months until something turns up cancerous. So I might be looking at the chest surgery I do want as soon as next winter.

On the other hand, between the family history of breast cancer and the ongoing hormone-related issues, I don't know that I'd able to go on T at any point. It seems like asking for trouble. I keep putting it off for health reasons, and I'm just not sure I care anymore.

Maybe that's the depression talking, or maybe I'm just a Bad Trans Person.

I've been circling around "genderqueer" and "third gender" and all that baggage for a while now, and this is only one of the reasons. But there's a lot of scorn in some parts of the trans community for that attitude and I'm not sure if my hesitance about accepting it is

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that it doesn't fit or that I'm frustrated with the health issues or that I'm worried about being an Bad Trans Person. I think it does fit - I'm definitely not female but I don't think we're totally male either - so I'm pretty sure it's one of the other two, or both.

Which

there's not much I can do about that.

So I don't know where I go from here, aside from continuing to work it out inside my head.

CYA

Arizona is a red, red state and I've read dozens of horror stories about hospital care for LGBT Americans. I worried a lot before each of my hospitalizations. In both cases, however, I was fortunate.

I was lucky for the hospital where I had my chest

surgery, which was extremely efficient and never batted an eye when I designated my girlfriend as my caregiver and handed over a medical power of

attorney.

I was lucky for the hospital where I had my brain

surgery, which was very nice and accommodating and never gave my girlfriend a speck of trouble and one of the nurses even overheard her refer to me as "he" to a friend and asked me if I'd prefer male pronouns. I told her it was okay because I was too out of it to care but that was so above and beyond what I

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expected, especially since I did worry about it being a Catholic hospital. Sometimes good works and standard of care win out.

And two months later the hospital lost the support of the diocese because they saved a pregnant woman's life instead of letting her die with her fetus. Standard of care wins in the short term. We all lose in the long term.

CHINESE NEW YEAR 2011

Happy new year to me. I had post-surgery follow up early this week. I'm looking at the same six month cycle I was given last time.

looking at the same six month cycle I was given last time. What next? I'll worry

What next? I'll worry about that when I get there, just as I will with the MRI, with the vertigo and the obsessive thoughts and the anxiety and the depression. I'll keep going, because the alternative isn't really an alternative.

Getting by as best I can is all I can do. I lived in fear between my MRI results and my brain surgery, and it was exhausting. Even that was a known threat, though. Living in fear of what might be coming? Being afraid of a tumor that will take twenty or thirty years to grow back?

The stress would do me more harm than the tumors.

Last year my goal was to survive.

This year my goal is to live.

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Brainflowers

by Jack Finch

starling.edge@gmail.com

Brainflowers by Jack Finch starling.edge@gmail.com 24