The Pain Game

As far as when it started, all I know for certain is that it was Sunday. This drives my doctor crazy.
“This week? Last week?”
“…yes. I think.”
Over the years pain has become something I’m well able to ignore to a certain point, and just go about my day, doing what I need to do as if nothing was different, like the way I’ve gotten so accustomed to the occasional siren or that sticky spot on my kitchen floor that never seems to be un-sticky for any given length of time. I think I’ve even become more tolerable of pain than dog hair – at least the pain usually reduces to a completely ignore-able level without me having to do anything about it.

Usually.

Though it occasionally pops up in other peripheral parts of my body, such as a deep bruise on my arm that leaves me wondering how it got there (usually blamed on playing with Ruby), it usually prefers to center in my legs and abdomen, and while the legs are nearly always just surface pain, over time I’ve become quite impressed with the seemingly endless areas & levels of pain that the abdomen has in its arsenal.
From the umbilical hernia, a steady sharp pain on the surface that occasionally has momentary flashes which reflexively cause me to drop what I’m doing to put pressure on it so I don’t come flying out of myself like one of those streamer-poppers, to the deeper, milder liver pain that has become as natural of a feeling as wearing socks. They’ve basically become old friends, and I can’t even imagine, after all this time, what it would be like *not* to have them. It’s like my body is a beautiful old beat-up car – a classic eyesore, dented, scratched & long-faded paint with an engine that takes some finesse to get going, but has it’s own personality & charm – even if it’s only in my eyes.

I think it was early evening Sunday when I began noticing that this pain was something different. It wasn’t really any single place in my abdomen – it was the entire damn thing, and it wouldn’t go away or be appeased, regardless of any attempts to do so. It was determined.

I tried to sit down, take my attention away from it by making maille, but all I could focus on was the pain – which seemed to realize that I was trying to ignore it, so like a spoiled only child, just started screaming louder. Going down the mental checklist of similar times I’ve felt this in the past, I decided it was gastrointestinal – something was just being stubborn inside of me, and only laying down – and time – could help it. By this time it was nearing around 11pm, so I decided to call it a day, crawl into bed & read myself to sleep, feeling certain that it would be gone in the morning. I remembered this happening on other rare occasions, and felt confident a good stretch of unconsciousness would make things right as rain, & I could continue with all the things I needed to do the next day.

Apparently, it wanted to stay up and play a game that seemed to be called “Sleep through THIS!” – which I’m guessing it probably got the idea from one of those strange & brutal Japanese game shows. It *definitely* wasn’t “Jeopardy!”, which I would have much preferred.

The morning brought the same pain, not increasing enough to cause alarm but not decreasing either, and though the pain was tolerable, the energy it took to not focus on it so I could do what I needed to do wasn’t. I fought through each hour, doing what I could but not being able to do what I most *needed* to do. Hanging on my wall, sitting on my desk, draped over displays are about 40 necklaces, bracelets, cuffs, pendants & earrings, sitting there, mocking my inability to gather the energy & enthusiasm to remind people about them, to sell them, to be able to afford the herbs that could prevent this pain from coming back.

The less energy I had the more morose I became, the less I was able to do the more downhearted. I had to do something to try to change this, to reverse the pessimistic energy that I felt growing thicker around me, the increasing feeling that this whole jewelry business was just another something that I failed in making work. Thought of all I *had* accomplished didn’t help; now was the only thing that mattered. The only thing that ever matters – and I felt like shit in that “now”.

It was early afternoon when I finally moved my laptop & book, holding my stomach as I got out of bed. Holding my arm around it didn’t help the pain, but it seemed like something that I was supposed to do, pretending that it comforted the alien that was *obviously* digging around in there, eating its way up to my chest.

Filling five plastic shopping bags about half way with dog food & putting them in a Trader Joe’s bag, Ruby & I slowly walked down to Civic Center, where I usually see the people with their homeless dogs. I tried to enjoy the walk – sunshine warming my face, a light cool breeze, Ruby bouncing back & forth like a Chinese ping-pong ball on the sidewalk trying her best not to leave any exotic stench unsniffed.
It *was* a truly beautiful day, and even through the pain I had moments I was able to enjoy it, but mostly I just wanted to help feed some hungry dogs & then crawl back into bed. I went straight down to where I usually see the homeless people with their dogs, and found… no one. A couple homeless people, no dogs. I kept walking.

We went through the Civic Center park, around the side I sometimes see others with their dogs sitting in the shade, then back down Larkin again, getting further & further from home & bed. A left on Market, looking, getting frustrated I contemplated just leaving the food somewhere they would hopefully find it – but at this point I realized that wouldn’t do. I needed to see their faces, to hopefully inspire a smile & maybe even a ‘thanks!’. I needed it for me as much as I wanted to do it for them.

About 5 extra blocks & 10 minutes later, I turned a corner & finally saw one girl who looked homeless enough, and she had a dog! She was walking away from me, about 30 yards ahead, but I wasn’t losing her. No fucking way. I hooked up Ruby to her leash so she would keep up, and as much as I could, gave “chase”. Walking as smoothly as I can to prevent any unnecessary jostling of my abdomen, I think the only thing that let me catch up to her were my longer legs and her lack of any apparent need to walk at anything more than a leisurely gate. And Ruby, who helped pull me along when she saw the girl’s dog.

“Hey!” She turns around. I’m trying to look like I just happened to notice her and realized I have a bunch of bags of dog food in my hand.
“yeah?”
“I have a bunch of dog food. You want it? It’s apparently good – she likes it!” I say as I glance down at Ruby, now engaged in trying to inhale the other dog through her nose.
“Really? Yeah, I *totally* need some dog food.”
“Yeah? Okay – it’s yours. Hope it helps.”
“It totally does, I really needed do food. Thanks!”
“No problem, happy to. Entirely my pleasure!”

She looks in the bag, looks up at me, and then it happens. A smile.
“Thanks man, thanks a lot!”
“No worries. I like being able to help when I can, especially dogs!”

With that we part ways, her standing there turning to talk to someone else & me, a small smile on my face but a HUGE one in my heart, start heading home.
I don’t know if it’s my imagination or real or if there is any difference in the two, but I think the pain may have diminished, just a tiny bit. Maybe there wasn’t enough room for it all with the happiness I felt.

“See Ruby, see how she smiled? Now she’s a little happier, her pup will be able to eat for a few days, and I am *really* happy. See how amazing that is? Ruby ignores me for a really interesting smelling mailbox, and we keep walking – back home, and back to bed.

Last night I noticed that the worst of the abdominal pain had finally left, but not without leaving me a souvenir. I’m only slowly recovering from the amount of energy it sucked from me, the weariness & fatigue still preventing the enthusiasm & hope needed to promote my jewelry, letting people know it’s still here, still for sale, and I would still love to sell it.

At least I had enough energy to start a couple pieces last night, as well as begin learning an incredibly beautiful & intricate new weave – called “Dragonscale”.

As much as I love making maille & will probably never entirely stop, it’s frustratingly difficult to maintain the enthusiasm to keep pushing & trying to encourage people to buy when nothing is selling. Only a part of it has to do with the money. Perhaps nearly equally important is the satisfaction I feel, the excitement clients show, the happiness these bring them.

It’s even almost tempting just to give it all away –
just so I could see the smiles.

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or die trying

I had prepared myself. Rehearsed the things I would say over & over in my mind, thought of new ones, carefully planning the appropriate metaphors and similes so that even as someone who didn’t have aliens slowly digging their way out of the front of his body as they gestated and came to full explosive maturity, my doctor would be able to clearly understand what it’s like.

If I started getting a bit too happy during the hours leading up to our appointment, I would immediately think of one of the “Lost Dog” fliers I’ve seen posted recently on light posts around my neighborhood, the last one I saw about a week ago having a picture of a happy, smiling Golden Retriever on it.

I swear, I could step over human bodies littered in the street with the only thought being that I hoped that I didn’t get some of the blood or decomposed flesh stuck to my shoe, therefore having to scrape it off on the tattered clothes or face of the next corpse I came across – but show me a picture of a dog who was lost, its home and warmth and everything it knows suddenly gone, and I would sit there staring at it, fighting back tears and memorizing every detail just in the off chance I actually did see it wandering aimlessly around the neighborhood, matted fur, a hungry, confused and terrified look in its eyes as it occasionally stopped, lifted its nose to the air and sniffed, hoping for the faintest scent of home or companion.

I had pictured going into a vicious, swearing rant the second the door to my doctor’s office was closed and we were alone inside, ripping off my umbilical hernia belt, violently lifting my shirt and dropping my pants. “LOOK AT ME! Look at… THIS, this monstrosity that has taken over my life and destroyed my hope, this THING that makes me mentally destroy any chance of a human companion before I even say the first word to a woman I could see myself with, someone to care for and to care for me, someone to give myself to, someone that will again fight like hell to stay alive for because I couldn’t stand the thought of them being alone. THIS DEFORMITY that I do NOT have to live with, do not have to accept, like having my legs cut off or being born with half a face or worse, no sense of style. The surgeon says he’s concerned that I would die if I had the operation, but doesn’t he understand that by NOT performing the procedure just to fucking put my insides back INSIDE that he is condemning me to an existence where every morning I look at myself, every time I wish I could go swimming, every day that it’s warm and I can’t even just wear a fucking t-shirt without having to put on the hernia belt and another shirt to cover that I feel that I would rather be dead? What right does HE have to play god, this spineless, ignorant, self-centered human-shaped Jell-O mold?

Et-cetera, et cetera. Fire & brimstone. The 15 minute scourge of Ward 86 at SFGH. Sure, there may be a bit of hyperbole in all that was said, but it wouldn’t be forgotten. John (my doctor) would cower in the corner, eyes wide and terrified and amidst the indiscernible mutterings of prayer for his safety and futile attempts to calm my tirade, swearing to me that he would relay every word I said to the surgeon, Dr. Mackersie, the second he felt safe enough to come out of the corner and sit at his computer to send an email.

Yeah, it didn’t really happen like that. At all.

The moment the door was shut to his office, he turned to me and with a sorrowful, incredibly caring look on his face said “I read the email you sent to me (see previous post), but… I didn’t know how to reply.”

Wait. What was I thinking? This is my friend, this is the guy who knows me, the guy who cares for me. I quickly fired the original mental director for this performance and brought out a new one. This needed to be a quiet scene, one where I played the much more realistic role of someone entirely drained of the passion for life, someone who, after so many years of holding on desperately to that last thin thread of hope, had finally let it go after John’s email to me saying that the surgeon felt the procedure would be too dangerous to perform.

Though the fact that I wasn’t really playing a role made it much easier, I still should win a goddamn Oscar for it. Sure, I overstated here, embellished there, and inflated some things quite a bit, but when you’re a generally happy person called on to act despondent & dejected so that the emotion of what you actually do feel sometimes is pounded like a stake into the heart of the person you absolutely, unquestionably HAVE to relay it to, a little bit of dramatic license is necessary. After all, HE doesn’t have a scrotum sticking out of HIS belly – but I think I helped him understand what it was like.

And I’m nearly certain that I saw him fighting back a tear or two at times.

The person I showed him truly was me, in every way. In everything said, in everything felt, in every tear that I shed yesterday – but as an adoptee, the very first thing I learned in life as I was taken from my mother’s arms, 15 minutes after I was born, was how to shut down and build nearly impenetrable walls that kept the pain away, so even I don’t know that it’s there, and even less seldom feel it. As least not most of the time. I’ve spent a large part of the last nearly 20 years working on getting behind those walls in a manageable way. When I first began, I went too far to quickly and had I guess what was some kind of break-down, where I was sent home from work & spent the next three days in bed, in a fetal position, trembling, wrapped as tightly as I could get my blanket around me.

Yesterday, I was able to carefully make just the most infinitesimal crack in one of my walls, and bring out only what I needed at the time. I’m not sure if that’s progress on my issues or not, but hell, it worked for what I needed it to, and he had sent an email to the surgeon asking about something he said, and also mentioned looking into a different hospital for the procedure if my insurance covers it. “I don’t want you to have your hopes shattered again if the other hospital also says no.”
“John… they already are.”

He was standing above me, put his hand gently on my shoulder, and sighed in a knowing but somewhat helpless way. I stood up, thanked him for everything he has done, we hugged warmly, and I left with the impression that if he could perform the surgery himself, he just might – knowing that it could kill me, but also knowing that I felt that if I died because someone was at least trying, that would be infinitely better than living the entire remainder of my life with the hernias and pain unendingly growing, knowing that all it would take is one fucking person. One person with enough courage to let me have the chance to live the life I fought so hard to create, then fought again to keep.

All in all, I think the appointment went pretty well – though I would have liked to have the chance to perform that scene where I ripped off my clothes and said “LOOK AT ME! OPEN YOUR EYES AND LOOK! I’M A MONSTER! YOU’RE DOING THIS TO ME!”
But then I would have to hire a completely undetectable camera crew, and I just don’t know where to find one of those for under $20.

Raising hell to escape from it

Today is the day I show them what’s been hidden behind the curtains.
In a few hours I make my way out the door to the hospital, for the monthly-ish appointment with my Doctor of nearly eleven years. He’s seen and been there for me for everything I’ve gone through, always by my side, always caring, always treating me as more than just a patient. John seems to see me as I see him, as a friend, and though it’s unlikely he shares the same sentiment towards me, I hold him as one of my best. He knows more about me in some ways than anyone else ever will, and he’s seen me at my physical worst.

But he hasn’t seen what I’ve been hiding. For the most part, I’ve kept that from him – from everybody – and have always played the role of the cheerful patient, regardless of how I physically felt. But this reaches far beyond physical. Sure, the hernias I have are somewhat painful, but more of a discomfort than an actual pain for the most part as I feel my intestines slide back through the muscle wall and find their little pocket of flesh when I stand and let gravity have its unforgiving way, stretching it like a growing foetus.

For five years, since my umbilical hernia started stretching my belly and giving me an outie that looked like I swallowed a cucumber whole and now it was sitting in my stomach, one end pressing up against my spine and the other trying to force its way out of my navel, I’ve been trying to get the operation that tucked everything back inside. Call it vanity, call it whatever the fuck you want, but I hated it then, back when it was a junior deformity, and it’s only grown; grown to the point of completely fucking my quality of life.

And unless this surgery is done, it will be there for the rest of my life, continuing to grow and get more disgusting as the months progress – along with my new hernia, an “inguinal” hernia, which sits, growing rapidly, jut to the top right of my groin. It’s nearly as if I have three ball-sacks now – one coming out of my abdomen, one on top of my c&b, and the original. From the discomfort to the monstrously hideous appearance that prevents me from doing nearly anything involving core muscles to simply taking my shirt off in front of *anyone*, I’m ridiculously limited in the things I used to love doing. STILL love doing, but can’t or won’t.

I’ve been nice up until now. I’ve talked rationally, pleaded, begged – I’ve written emails not only to my doctor* but to the surgeon who won’t do the operation based on a few minutes of poking & prodding and through that deciding that it was too risky, and I’m fucking tired of being nice, of being understanding.

Today I go see my doctor, and today, I’m not hiding my anger, pain, anguish or sorrow. I’m going to be someone he’s never seen before, and though performing the surgery is not his decision, it just might give him the balls to relay the importance of it to the person who is.

I’m fucking done being the good patient. The understanding one. The rational one.
I don’t give a fuck anymore, and it’s time to raise some hell.

*
Dear John,
Thank you for your call on Monday.

I appreciate you putting in the order for the hernia support belt, but to be truly honest with you (as I’ve always tried to be) – if the only way I’ll get the surgery I need is to have my intestines twist, then that’s what I’m going to try to somehow make happen.
For over four years (since Kat & I stopped seeing each other, back when the hernia was about 1/5 what it is now) I have pushed any possible romantic involvement away, not daring to even innocently flirt, terrified of even the possibility of anyone seeing the hernia, even more than I was afraid of telling people I was HIV+.
I haven’t even kissed anyone in over three years.

I used to have the morphine to numb the oppressive loneliness that the hernia has created in my life, and now, I don’t even have that. Living a life without even the hope of finding someone to share it with is getting to be too much to bear. I try, but at times I feel incredibly weak.

I’ve turned down offers to go swimming with friends, to go for camping trips at rivers or lakes, and anywhere or anything where I might need to take my shirt & hernia truss off. Even I try not to look at it in the mirror.

Though I understand the concerns about the ascites, I am able to keep it at a bare minimum hardly even trying to. On the day my inguinal hernia ripped through the muscle, I can *almost* guarantee that it had nothing to do with ascites – when I first felt the sharp pain, I was just playing with Ruby a little too enthusiastically. Due to the umbilical hernia combined with the months upon months I was mostly confined to a hospital bed, my core muscles have weakened to the point where they don’t have the strength to keep things where they belong anymore. I live in this body every day & pay close attention to it, and strongly feel that the weakness of the muscles have an incredibly large part in it all. I know that I can keep any fluid buildup down to the barest minimum before & after surgery if I’m allowed it. It’s barely an issue even without taking the herbs or meds for it these days – and if I have the surgery I’ll do everything it takes to heal without any complications at all.
I just want to feel like I’m alive again…

John, I’m sure you’re aware that it’s more than the lack of romance that is causing the emotional pain. The life I worked so incredibly hard to create -performing, costumes, and simply the joy for life that people once said inspired them – that’s gone, and it’s almost entirely due to the hernia & it’s physical & psychological effect on me.

When I was in hospice & the hospital after that I have NO doubt that it was my will to live that kept me alive and instilled in me the drive to learn to walk again. The spirit I once had to remain alive is dwindling.

Though it seems like Dr. Makersie is kind & thoughtful, there is one thing that he doesn’t seem to understand. Though the “statistics” say there could be a 30% chance of complications with the surgery… as my will to live fades, the chance of me dying without the surgery increases every day.