I’m not dead yet

Back when I was living in the slug-infested flophouse, waiting on an appointment to get a PET scan, I researched how to kill oneself and found Final Exit. The book details several methods, including pills, slicing one’s wrists and others. But it only recommends one — plastic bag + helium. It’s quick, painless and, if done correctly, ensures death. So the book says.

This book isn’t obscure. You can buy it on Amazon. So I wondered why I had never heard of this method before, especially if it was as effective as the books says it is. In pop culture, potential suicides either take pills, shoot themselves, hang themselves or jump off buildings. They’re all very dramatic but all of them have the potential to fail.

So what’s wrong with the bag?

it’s creepy, for one. I tried on a couple bags for size, as the book suggested to practice before going through with self-delivery — its term for suicide for terminal patients. Even without the presence of deadly gas, the experience wasn’t pleasant. I decided, then, that I couldn’t do it. It made me feel panicky  a little queasy, and for some reason my mind flashed back to one of the strongest images I remember of the time immediately following my mother’s death: Coming back to the house after her funeral, the floors were scattered with her empty shoes and slippers, tiny and old-lady feminine. They were the saddest things I’d ever seen in my life.

The bag is also a bad look. I imagined what I would look like when found — slumped down in the bed with a plastic bag that advertises Adidas — looking ridiculous, in other words. I wasn’t ready.

This past Sunday, I tested a few bags for holes and again put them over my head. I didn’t panic. I just worried that the one that was tall enough wasn’t wide enough. Other pressures had overridden my vanity and fears.

I’d gotten to the point of being mostly practical, taking a calm assessment before making a final choice, which, thanks to intervention, I didn’t have to make.

Desperate Measures

I will have to leave where I’m staying on this coming Tuesday night at the latest. I’ve been bouncing around from friend to friend. I’m also almost out of money. I have ARS $1050 of my own money left. The amazing fundraising effort spearheaded by my friend Vivi has helped get me through the last two months, along with money earned from art walks, a few affiliate sales and a recent donation from the Mums and the performers at Second Story Buenos Aires.

But the money raised was meant to tide me over for a week, maintain me during the hospital stay and provide some seed money for a new life, however, short, after surgery. The surgery didn’t happen — it should have happened a year ago, 6 months ago, two months ago, a month ago. But I’m in the public system and things don’t move like they should.

I have a new date for surgery on the 25th of this month. After being punked more than once, I can’t say I have a lot of hope. But I’ve been trying to stay positive and focus on each new date. I’ve wanted to give up more than once. A lot more than once. But so many people have helped me, including Argentine doctors, I just couldn’t let all that effort, time and money turn out to be for nothing. Yes, I’ve let others help me decide what the value of my own life is. In this joyless stasis, I have a hard time calculating it for myself. But part of me does want to see what sort of life I can create with whatever time the surgery gives me.

But, it’s almost over now, one way or the other.

I have no where to go. I don’t have enough money to stay in a hostel from the 13th to the 24th. I can’t be homeless in Buenos Aires with cancer and a colostomy bag. I’m humiliated to ask for more help from my friends.

I will make a decision to deliver myself from this life — in the parlance of the Hemlock Society — on Monday night. I have enough money to buy what I need to do that. Whether or not I have the balls depends on… well, whether or not I have the balls.

Unless I can make ARS $3000 in three days. That’s about USD $425.

I have no right to ask for this and feel absolutely no ill will or resentment toward anyone who can’t  help or doesn’t want to help. I’ve asked enough and folks have given so much.

I took myself off chemo yesterday, without consulting my doctors, which wouldn’t be possible anyway. I did it to gain back some energy. I declined an opportunity recently to conduct art walks because I could barely drag myself out of bed to go to the bathroom, never mind walking for three hours talking about art and history. So if I can, I’ll do some walks. But it won’t be enough. I’d have to find 21 guests. But if I could, that would be very cool.

If you want to help you can PayPal my helpmeet Claire at csadeghzadeh at g mail dot com. She can then Xoom me the money when it’s enough. If it’s not enough, the money won’t be in my hands and Claire can refund your money or pass it on to someone in Buenos Aires so they can donate it to Marie Curie Hospital where I’ve been receiving oncological care. The latter would be my choice. A little old lady roams the halls with a donation bucket every day and I haven’t given nearly enough.

If nothing else, you can share my blog with others on your favorite social networks or start a campaign on some fundraising site. I’m sure there are people who would be moved if they haven’t heard about my situation yet.

This is a terrible post to write and a terrible thing to ask, I know. It’s blackmail, of a sort, I guess.

I have friends tell me I’m valuable, that they value me, and that I should keep fighting. It’s very hard. I take what they say on faith, if you will, but I didn’t feel it at all.

I’m just too tired. I want it to end.

Stalled again

The day started out well enough. although I only got around 4 hours sleep, I did get up in plenty of time, washed the dishes, finished packing and left kate’s flat. Having never taken the subte on Sunday so early in the morning, I was taken aback to discover it wasn’t open at 7:15. Off to Corrientes for a bus. I dug into my backpack for my guia. Saw 101 and 115 would work. Waited 20 minutes for both, but none came. Got in a cab. Stated the address. Cab driver says, Soy nuevo. He doesn’t know the street Caseros. Huh? He stops the meter. I get out. Get another cab. This guy knows Caseros but when we reach it, he turns the wrong way. Sigh. I say, Señor, it’s back that way. We take another street back behind Parque Patricios, cobblestoned most of the way and slow.

Amazingly, I make it to Penna exactly at 8. Campus is deserted. I’m worried that somehow I’ve misunderstood the date. Find my surgery order and verify it. (It’s then the handles stretch and break on my bag that holds all my important papers including PET scans. The bag lands on its back in a puddle of water.) 6 people are waiting to be admitted in the waiting room outside the surgical ward. There’s one nurse on duty but otherwise what’s usually a busy building is quiet and empty.

We all wait another hour. The others chat about anything other than what I they’re there for. I appear to be the youngest. They all look as tired as I am.

Finally, a young woman in funny pants and silly shoes comes in. She says, She’s sorry, but the operating room is still out of service. The only operating room available is for la guardia, the emergency room. She says, Please come back tomorrow early and we will issue another turno. 7 people groan in unison.

I try to chat her up in English just to make sure I understand everything. She only knows the word, March, as in the month. Middle of march, the earliest date I can get. The sometimes available OR in la guardia seemed to have been held out like a tease — if we all just camp out there, they might make room for us. But no.

I’m the last one to leave the waiting room but decide to get my cigs out of a pocket in my backback so I can IMMEDIATELY light up when I hit outdoors. Then one of my doctors, a young woman named Stefanie, I think? comes in, does a double take on me. stops in the middle of the room and then says, “Richard, why are you here?”

I’m speechless for a few seconds.

But then tell her I have a surgery date. She asks to see my papers. I hand them over. The rest of the group has by now smelled the status of a real doctor and has come back to listen to what she has to say. I have fantasies that either the gringo card or the cancer card will get me in ahead of everyone else, even the geezer with hair as white and soft as bunny fur who tells her he’s in pain every night and has problems sleeping.

But no, she just repeats the same thing the other woman says. To make sure I understand she says it one more time in simplified Spanish, in the way I imagine to she talks to a child or a dog.

“Come back tomorrow and we will talk.”

And something turned in on itself

When I was a kid I would lie in bed and would either talk to god or play mind games. I say, talk to god because he never talked back, unless his voice consisted of the execrative silence of my suburban bedroom, and he never turned me into the Silver Surfer, as I'd asked more than once, sheets bunched in clenched fists and pulled tight across my neck. I was afraid I'd have to go through life like everyone else, that I'd never see another world, or glide through the emptiness between the stars.

Behind my eyes, though, I'd see what I called then, The Time Tunnel, named after a sci-fi show of the same name. In the show, the Time Tunnel was a large orange metal structure with spiraling gradating circles that created a portal through which the show's handsome heroes could pass and have adventures, usually saving the world, or someone in it.

When I closed my eyes and concentrated, a simulacrum of the Time Tunnel sometimes began swirling, like a pale white overlay hanging over the blackness of my eyelids. No doubt it was easily explained pressures put on the physiognomy of the eye but since I'd never heard or read about anyone talking about such a phenomena, I thought it was special to me. “Watching” it would render me into a kind of fugue state and although it wasn't exactly comforting, I would repeat the ritual whenever I had trouble falling asleep.

I've never told anyone about these practices until I started writing about them just now.

There were other things, other forms, behind my eyes. I saw faces. Like the Time Tunnel, their forms were ghostly and they moved. Detailed faces, always with distinguishing characeristics and characters — faces who inhabited other lives and stories, endured their own sufferings, surfed their own timelines. Sometimes they looked at me and sometimes not. When they did, it was scary. Or, scarier. I could never understand exactly why, though, they just registered as a vague menace

Once I started looking at them it was difficult to stop. Unlike the Time Tunnel trick, The Faces weren't a means to an end. They were compelling, yes, and I often invoked the experience out of some perverse curiosity, but once I started looking for them, as they emerged out of flat gray sightlessness and turned and transformed from second to second into other faces, and still other faces, with silent murmuring lips and sharp eyes, and shoulders and chins that turned from me, it was difficult to make them go away. I'd fall asleep being watched.

I don't know exactly when The Faces stopped appearing behind my eyes — possibly late adolescence. I don't remember seeing them in college or after.

After I moved to Buenos Aires, they came back. It would make sense if I started seeing them in the hospital after my colon split in two, but my dreams in those days were in pain-killer induced Technicolor and very, very weird. I spent a long time drinking beer on a bridge in an after-death neighborhood inhabited by Hank Williams and Jean Genet. I never saw them; but I knew they were there. Also, I flew over Cuba in a magic umbrella, navigating colorful currents in the air. If I can ever find the vocabulary to write about them, further, I will. But, not now.

These days I confront The Faces, and they seem not to like that much. They're even more detailed than I remember their being from childhood. I see their dimples and their moles. I saw a woman wearing intricately woven scarves and a funny hat, a man with buck teeth and a veiny neck and eyes that say, “I killed someone.” These details are fleeting, and are impressed upon me quickly, like stabs of a tattoo needle. I wish I knew what they meant. Maybe they're the dead. Maybe they're composites of characters I've seen in movies, or met in dreams, smoked out of my under-mind by anxiety and fear. I just know that now I seek them out whenever my eyes close.

I look them in their eyes and wonder, what if there were nothing?

Why does anything exist at all? What would non-existence feel like? What exactly is subjectivity?

Since childhood, playing all these head games in my bed, I've asked these questions. When I do, a sense of otherness, a concrete feeling of having rendered myself an other, of othering everything, of having, if only for a few seconds, separated the fiction of my self and looked at me from some other place, saw Rick Powell as finite and so very circumscribed by a body, by time, by faults that I'll never overcome, certainly not now, that recognition thrills me and races my heart.

But, ah, I have no words to describe it. That run-on sentence really doesn't get it. I just tried to invoke that contemplative, alienated state and failed. Still, I know that, hahaha, nothingness will exist for me sooner rather than later and it pisses me off that I won't be there to experience it.

But it's also comforting. There will be an end, and I think I'm going quietly after all.

 

End Game

I’ve felt emptied of words — ones executed through my fingers, anyway. I’m still able to talk. Too much, probably. Just ask Joel. Or Kate.

Whenever I tried to write, the spaces in my head reserved for reflection or creativity were filled up with hate, resentment, anxiety, fatalism. All the other cancer blogs seem so hopeful and centered. And also: Not perverse. As usual, I was the dour, damnable odd-man out.

We all battle the fatigue of chemo, the uncertainty of not-knowing-anything-for-sure, but few I’ve read have to push through what happened to me last week.

I used to live in what could be kindly described as a slum motel. Slugs came out at night, leaving their slime across cooking utensils, bathroom sinks and bedroom walls. Fearless cockroaches infested everything, night and day. Some of them were 2.5 inches long. Buildings were under construction on both sides of my building, the racket of pounding and powertools assaulting my ears from 8 AM until 7 PM. I had to pirate my Internet connection but I guess, rather than requiring a password, the owner of the router kept moving it farther and farther away from where I sat, until dialup would have been faster.

But nothing was worse that having a fat, sloppy, semi-retarded building manager shout at me in Spanish for leaving a strip of toilet paper in the bowl. (It had a drop of coffee on it, that’s it, and the bowl itself was clean. I’d just forgotten to flush the paper down.) So when I told him I didn’t understand everything he was telling me, he droped his pants and mooned me with his giant ass in atttept to demonstrate the process of having to wipe it with something that offensive centimeters beneath his drooping balls.

Now I’ve been in a lot of strange situations in my life, and in some semi-dangerous ones, facing down tripping gypsy drug dealers and belligerent cops, but when that dude dropped his pants in front of me, I felt I’d moved into a whole new plane of awful. Appalled, I shut the door on him without responding.

So, he kicked it in, and came into my room, fists clenched, gasping in rage.

At some point in the debacle that was Conyers Thompson, a friend of mine, a former Juanele employee, chided me for my choice in business partners and friends, in his case, and said, “Please, Rick, no more crazy people.”

Well, Claire, I had to face down another crazy person but it wasn’t a relationship I chose exactly. And it went steps farther by including violence and suggesting more to come.

Frightened, unnerved and sick of being fucked with, I put out the call to my friends and my good friend and guardian angel, Vivi, began a fundraising drive on Facebook as well as organized an event at a local expat bar, Magdalena’s Party. Besides the space, the bar donated several bottles of vodka plus lemonade to mix it. Lots of folks and businesses also donated items to auction off. There was a raffle at the door. I made a pretty good haul and so at least I can breathe easy for the next two months, I hope, without worrying about how I’ll eat or care for myself.

More importantly, my dear gal pal, Sonya, arranged a place for me to stay and to have her suitcase delivered in person by another salt-of-the-earth type, Stephen, who helped me move. I had been so upset that Sunday before I left the Boedo flophouse that I was nauseous all day and felt like throwing up. As the taxi pulled away from that hellhole, I immediately began to feel better. And better.

Now, instead of stewing in poverty, I’m living in one of Buenos Aires’ most cheto neighborhoods in a private room, my own bathroom and a balcony outside some French doors. Amazing! I couldn’t believe how quickly folks rallied around me. The room has been provided for free by two fabulous and friendly women, an incredibly generous lesbian couple from Australia, who reveal new talents and kindnesses to me daily.

So here I am writing again.

That’s the good news.

The bad news is that the date for my surgery is two months away now. I thought I would be able to get admitted right away but I can’t even get appointments for the pre-surgery studies until after Christmas. I won’t know for sure for a couple days but in all likelihood I will have to go back on chemo in the interim.

Still, I’m sleeping well for the first time in months, without obsessing over mundanities or crazy ex-bosses. I have plenty of money, thanks to the benefit and lots of a generous people, a safe and clean place to live and plenty of support. They keep moving the goalpost but at least I still have the ball and I’m heading down the field.

 

It’s time

How would you behave if one of your best friends had a terminal illness? Would you spend as much time with him as you could? Or would you treat his time, this time, like any other.

Would you throw it back on him?

Would you understand the panic and despair he felt daily, the struggle to do anything, as the most banal task felt like something to be faced down like a monster trying to devour him, as a life or death decision focused upon every time he got up in the morning, or made food or washed the dishes or set the alarm or cleaned up shit leaking from his colostomy bag?

How every missed event or party or get-together feels like, not a lost opportunity, but like a moral failing, like condemnation, like the last of something that will never return, like spilled seed, as something too precious — a rare scent quickly dispersed — ha! — that will never go back in the bottle.

Would you or could you understand that?

Or would you continue to believe that there’s always another day just like any other, that the sun will always come up or go down, that every eye remains open forever, fixed on the horizon — even in death.

Guest Post: What My Wife Doesn’t Know

This is a guest post byCameron Von St. James, who shares some thoughts on the effect of illness on the caregivers. Thanks, Cameron.

My life was wonderful. My wife and I had just welcomed our daughter into the world, and we were filled with so much happiness and joy. It didn’t seem that anything could make life any better. In fact, nothing could make life any better. However, something could make life much, much worse. My wife, a mere three months after giving birth, was diagnosed with mesothelioma. Watching her cry at her doctor’s words, I wondered how we would manage to make it through this.

Our daughter, Lily was only three months old when Heather was diagnosed. As a caregiver, I had to take care of both of them, my job, our home, and our lives. I was overwhelmed. My anger got the best of me most days, and I spent a fair amount of time yelling profanities at people who were only trying to help, including the people at church. I quickly realized that I had to get myself together. I had a lot of medical decisions to make with my wife. They were already being made with a lot of emotion to consider, and I didn’t need my anger clouding that. I had to be strong for my girls.

With so much to do, I was overwhelmed. There were so many doctor appointments and travel arrangements. I was struggling. I learned that I had to prioritize everything on my list of things to do if I wanted to make it work. I did, but it was still overwhelming. It was then that I decided I needed to start accepting the offers of help that our loved ones were offering. I was overwhelmed at how kind and generous they were, and how much help they really were. I couldn’t have made it through this time without them.

Despite the difficulty we faced after her diagnosis, the hardest part of my wife’s diagnosis was the two months I had to spend away from her after her surgery in Boston. She and Lily went to South Dakota to stay with her parents so they could care for her and the baby while she recovered and prepared for her next round of mesothelioma treaments. The decision to stay behind and continue to work was a difficult decision, but it was a necessary decision. I had to keep us afloat, and there was no way I could do that and care for my wife and daughter at the same time.

During that time, I was able to see my family only once. I left Friday after work and had to be home Monday morning for work again. I drove 11 hours each way in a snowstorm to see my family for a little more than 24 hours. It was completely worth every second in the car. It only made me realize that I was fortunate to have the people in my life to help me make this period in our lives easier on us.

My wife doesn’t know how difficult this time was for me, though we talked about it once. This might give her an idea of how I felt after her diagnosis. Being a caregiver can be an overwhelming experience, but those who are caregivers would do anything to help their loved ones who are suffering. I hope that my story might be a source of hope and comfort for those currently battling disease.