Cancer, Colostomy Bags, and Beauty

 

 

I have a colostomy bag because I had cancer, you see. I was diagnosed with cancer in 2011. I was 32 years old.  There were two tumors, one in my rectum, and another one further up. The tumor in my rectum I named Becky, but I can’t remember what I named the other one, but it doesn’t matter, because Becky was the important one, being the big ugly 13 plus centimeter bitch that she was.

 

Through the marvels of modern medicine, and science, I lived through a year of torture, but the kind and wonderful Dr. Hannah Ha, had to remove my rectum, and replace it with a nasty little bag that I empty my shit out of. This is my life, and it is all I have to work with.  I believe in the whole “Stoma Pride” and “Uncover Ostomy” movements, and as soon as I could, when my surgery scars had healed up, I was in my friend Mike Draga’s photography studio, modeling my chemo chic physique, and plain, flesh coloured ostomy pouch. So many people have complimented me on these pictures, telling me how strong and beautiful I am for not being ashamed of the fact that I shit in a bag, and I was happy to be putting up this front, because I do believe in that saying, “Fake it ‘til ya make it”.  That is to say, that if I smile, and act happy, and greatful to be alive, despite the fact that I shit in a bag, and despite that fact that I sometimes I wish that I had died of cancer instead, eventually, I will be happy about all of  this, and really feel good about myself.

 

And I think that I was getting there, or at least I was trying to. I will speak very openly about my ostomy pouch, I will show it to anyone who wants to see it, I’ll even show a person my “What Hole”, if they are curious, which is the place where my butt hole used to be. I really don’t care. People should know about this, and if it makes you uncomfortable to hear about it, then obviously you have a problem. Please understand; as ostomates, we have to talk about it, we have to feel comfortable with our bodies, and talking helps, because historically, we have been made to feel ashamed about this miraculous surgery that has allowed us to continue living, just because it changes how we poop, and the fact of the matter is this; everyone poops, I just do it in a different way. I will also, unabashedly, show people my ostomy pouches, just so they know what one looks like, and the reactions have been mixed. Honestly, most people are made very uncomfortable by the idea of even looking at a pouch, and I think that’s really fucking immature. It’s like a 12 year old boy being embarrassed by the sight of a tampon, and that’s what I equate my pouch to; a tampon. I will show people my stoma as well, but only in a picture, because stoma’s are like little poop volcanoes, and you never know when it might erupt, and that IS a little disgusting. Okay, it’s a lot disgusting. As ostomates, we can’t control when or where we poop, or fart, and it can be embarrassing, but life is full of these moments, and I have to learn to go with it, and understand that I’m not responsible for others peoples reactions to something that I have no control over, and anyway, bitch, I’m a fucking survivor, so suck on that.

 

I guess for me, being up front and confrontational about my smelly little friend is how I empower myself, and I am a daring little shit disturber anyway, so annoying people with unsolicited information about the art of changing an ostomy pouch comes quite naturally to me, and if I make someone uncomfortable, I usually enjoy it, because the fact that my pouch makes you uncomfortable says so much more about you than it does about me. And I was making headway in the “Fake it ‘til ya make it” philosophy, and then Lance happened.

 

Let me preface Lance with this little bit of information; he is an MRA supporter. MRA stands for Men’s Rights Activism, and if you an MRA supporter, this means you don’t believe that rape actually happens most of the time, or that it’s justifiable. You think that a woman owes you sex if you take her out to dinner, you might believe that the age of sexual consent should be lowered to 12, and in all likelihood, if you are an MRA supporter, you are a fat arrogant, mysoginistic internet troll wearing a fedora sending death, and rape threats to women like me. Fuck you. Send me a death threat, I would love a death threat, come and rape me and kill me you fucking assholes. I. Double dog. Dare. You. Lance is among their numbers, but at the time, I didn’t know this about him. He is actually friends with Gabriel, the man I just recently ended a five year relationship with because he’s a selfish drug addict, and a rapist, and I don’t need people like that in my life. It stifles my creativity, and, I don’t know if you heard, but, drugs are bad, I should know. The one nice thing that I can say about Lance is that he’s an awfully good fire performer, he’s not half bad looking, and he gives one hell of a backrub, but that’s where it ends, he is a dick, and he wears a fedora.

 

At some point after my surgery, Lance critisised me to my face about how I show people my bag, and about how disgusting he found it, and about how things like that are private, and about how wrong I was for telling anyone about something that no one should ever know anything about because it’s so repulsive. He told me that I should stop wearing crop tops so that  I could display my pouch when I was out at the Crack Fox, a bar we all frequented. He used the worst language possible, and he yelled at me in my house. Bear in mind that I didn’t know about his MRA activities at the time, being that he, (like me), is polytheist, polyamorous, bisexual, into kink, and seemingly liberal, and at the time he was involved in this whole cuckolding relationship with an older woman and her husband. I was shocked by what he said to me, too say the very least.

 

I don’t even remember what prompted his barrage of insults directed at me, and it doesn’t even matter ,because no one stands above me in my living room and says shit to me about anything I do that isn’t hurting anyone. No one insults me in my house. I sat patiently on my leather love seat, looking at the peeling tile on the floor, waiting for him to finish his self righteous, body shaming monolauge, while I died on the inside. Then I stood up, looked him in the eye, (my gaze is intense), pointed at the front door, and said, “Get the fuck out, and don’t ever come back”. And do you know, he refused to leave, because he was there to visit with Gabriel.

 

It would behoove anyone reading this to know that, while Gabriel and I did in fact cohabitate for five years, his name was never on the rental lease, nor were any of the bills ever in his name, and this was by a design meant to protect me. This is my house. This will always be my house. I will never share it, and though I will allow lovers, and roommates to live with me, it remains always and forever my domain. I have a child, he will be nine years old this year, 2016, and the last thing I need in my life is a situation wherein I am beholding to a lover for a fucking place to live. The last thing I need is for a man to tire of me, and make me leave his domain. The last thing I need is to save up money for another rental deposit. No. This is my house. It was never Gabriel’s house, I was just letting him live here. Yes, he paid the bills when he had a job (mostly he mooched off of me and my welfare benefits) but I also let him have sex with  me, and use my dishes, and furniture. I let him the breath the air in my house, and set the thermostat, so he owed me anyway. He owes me still, and mostly in apologies.

 

Suffice to say, that at Lances refusal to leave my house, I became livid, and shrill, and I’m a fucking scary bitch when this happens, and Lance left with Gabriel in a huff. At some point he apologized to me for what he said to me, but the apology was peppered with a but’s, but’s, and more but’s, and when any apology is followed by a “but”, as in, “I’m sorry, but”, that’s not an apology. Mostly Lance was pissed that I’d “told him what to do”, and no one “Tells him what to do”. Motherfucker, I will tell anyone what to do in my house.

 

The truth is that as Lance was laying on the insults that day, he was digging into all of the insecurities I still have about the fact that I have a colostomy bag, and that hurt more than I have words for at the moment. My seeming confidence about anything concerning myself is made of sand. I’m a very insecure person in general, and it’s easy to hurt me. Maybe that’s why I can be so mean, and why I am sometimes more than just a little bit of an arrogant bully, but I don’t know any other way to protect myself from all of the ass holes in this world, other than to be a terrible repellant bitch. I am surrounded by walls, but understand that I have to be, or I get hurt. The flip side to this is that I can also be very self-deprecating. I call my writing and my artwork trash, because someone is going to, and if I say it first, well, then it doesn’t hurt so much when I am ridiculed, or worse, ignored, by my peers.

 

There have been issues between me and my sons father Russ, since my son was born. He’s the worst kind of abuser; manipulative and passive aggressive, he uses language to tear women down, and he does it with a smile on his smug little face. I hate him to the bottom of my sore and damaged heart. But at the very least I can say the he was the last man who I ever allowed to make me cry. Russ and I cannot speak to one another. Indeed, I only communicate with him through a third party, we never speak directly. Russ is one of those people who is only capable of insults, and every conversation with him devolves into an argument filled with” you” statements, and verbal backhands to the face. He is a terrible person, and he’s very good at being terrible. In fact, he’s a monster, but he’s the monster who is also my son’s father.

 

When it comes to abuse, the only kind that matters in the eyes of the law is the kind that leaves marks, and I wish to the Gods that Russ had been physically abusive, if for no other reason than to give me a reason to keep our son away from him. As it stands, when someone abuses you verbally, it’s seen as moral failing on the part of the victim for being unable to let meaningless words roll off their back. Those of us who have been verbally abused know that this is absurd, and wrong, and that words can sometimes do the most damage of all.

 

When I was still communicating with Russ, he said to me, that shit bag you wear is a perfect expression of your personality Jenifer. He called me Jenifer, like that bothers me. My first name is Jenifer, but I go by Rose. Rose is my middle name, I have always gone by my middle name, and that was my parents decision, not mine, but for some reason, some people like to act as though I’m lying about what my name actually is, and then call me Jenifer when they’re pissed at me, or insulting me. I don’t mind being called Jenifer, or Jenny, though my preference is Rosie. Jenifer Rose is nice too.

 

This insult came on the heels of what Lance had to say to me about my colostomy bag, and it hurt, but body shaming women is Russ’ go to in any situation, and it’s weak, and cowardly, and wrong. It hurt me. Even still, when I remember what Lance and Russ said to me about my pouch still hurts me, because why? Why did they say these things to me? It’s not my fault that I had cancer, and it’s not my fault that I have a colostomy bag, although Russ did tell our son that I got colon cancer because I eat Styrofoam, so one can add batshit crazy to the list of things that Russ also is.

 

I had colon cancer because of a genetic predisposition, it runs on my dad’s side of the family, (though they never talk about it) and because I lived my whole life with undiagnosed IBS, because I was too embarrassed to talk about the problems I started having when I was about 11 years old. Basically, I was either constipated for days, sometimes weeks, or I had explosive diareah that I couldn’t control. My stomach hurt constantly, and I had gas all of the time. But see, no one wants to talk about poop, and I bet some people reading this are more disgusted by my revelation than they are emathetic towards a health issue that nearly killed me, and that, dear readers, is human nature; we are not empathetic creatures. We are like starving dogs ripping at each other’s throats, or maybe that’s just been my experience.

 

I used to have a gorgeous belly, flat and strong, but I worked for it. I biked 50 miles a week, I exercised like crazy, and I didn’t eat much, but when I did eat, I ate chocolate laxatives like they were decadant sweets, and I was also a raging coke head, and a heavy drinker. So yes, once upon a time, I was a hot as fuck. I was lithe, and toned.  My breasts were small and perky, my face was taut and lean, I was “that bitch” for a minute. I was also a kick ass roller derby girl, but only for a minute, but at the end of the day, the personal cost wasn’t worth the effort to be what society, and shallow men, deemed beautiful, because I didn’t feel beautiful. I was an intravenous cocaine, and heroin user in a physically abusive relationship (I was just as bad as him, mind you, about the punching and hitting) and every moment of my life was dedicated to maintaining my physical appearance, and obtaining drugs.

 

Then came a baby, and then came cancer, and then came a doctor to slice me in half. And now here I am all mangled and scared, but I should be happy with what I have, and what I have is a shitty little bag.

 

Cancer treatment is brutal. I would almost rather die than go through that again. Radiation treatment came first. This was meant to shrink the tumors, and being where the tumors were, and being that radiation therapy is still not pin point exact, from January to August of 2012, I lived with third degree burns on the inside, and outside of my anus, and vagina, and opiate pain medication can only do so much when you’re being microwaved alive. I had every single kind of opiate pain killer you could imagine, and it was not enough. I would lie in bed, curled up in a ball with ice packs between my legs, sobbing, because it hurt so much. I can’t even describe the deep physical pain I was in, other than to say that it was from the inside out, and I’m sure that the emotional pain only added to it all, because I knew that I was going to need a lifelong colostomy bag. There was no way around it. Becky had occupied my entire rectum, and she’d been there for a very long time, probably since I was in high school. So I turned to my old standby waiting in the wings, one of the loves of my life, that smooth warm bath on your insides; hello heroin.

 

I couldn’t control my bladder as the radiation therapy progressed, and I had to wear adult diapers all the time because I started pissing on myself, and it hurt to pee too. I cried when this started to happen, and not the silent little whimpers I kept to myself, I screamed. I raged. I broke dishes, and there holes in the walls of my house still. My tears were wiled, and I pulled out my hair, and I shot heroin. My needle, my spoon, and my dope were my best friends, as well as weed. I smoked a lot of that too. Shit. I still do smoke a lot of weed, but I’m not ashamed of that.

 

Heroin is that lover I regret, but still think of fondly from time to time because it was the only thing I had, other than music.  I needed to escape the nightmare I was living in. After a while I couldn’t walk because of the radiation, and I was shitting myself as well as pissing myself, and the other things I had to do in order to allieviate the pain of those third degree burns took every ounce of dignity that I had left.

 

The pain wasn’t the only problem though. As the treatments progressed, and the burns worsened, I noticed that my inner labia was receeding, it was melting as a matter of fact, and now, I have no inner labia. I have a very plump mons pubis, with long outer labia, and I think that the outward appearance of my genitalia is actually one of  my finer physical features to be honest, but part those petals, and all I have is very tight little hole. At least my clitoris still works, and I guess that’s all I really need, right? Wrong. If I wasn’t interested in intercourse it wouldn’t matter, but I am interested in intercourse, so it matters a lot. I lost a lot of really wonderful sexual sensitivity because that part of me is gone, and because of my surgery, the entrance to my vagina is very small now. After Dr. Ha removed my rectum, it was as if she sewed me up too tight, and then, because I don’t have an anus, there’s no give or stretch on the other side, and I’m shallower as well. Let me ask of any gentleman readers that I may have; Have you ever had sex with a virgin? Because that’s probably what it feels like to have sex with me, every single time, and I know that some of you may be erupting into rock hard erections at the thought of an eternally tight vagina, and that’s fine, but it really sucks for me, and I hope knowing this just made your fun go soft ,and if it didn’t, you’re probably an asshole wearing a fedora.

 

My ex-girlfriend Morgan used to fist me, and she could go all the way in to her wrist, but she did have small hands, but still, it was a whole fist. Now I can only get two fingers in there. The problem with my vagina now is that intercourse hurts if it’s not done properly, and then it might still hurt. It has be slow and gentle now,  I am not physically able to have that crazy balls to walls one hundred million different positions sex that I used to have. I just can’t. It hurts. I am very limited in what I can do, and this gives me anxiety, and makes me feel bad about myself. I really want to have sex, like right now, I would love nothing more than a cock in me, but I’m afraid to have sex. I don’t know if this person is going to listen to me, or follow directions, or if it’s going to start out well, but then start to hurt because he turns into a monsterous thrust-o-matic in the moments before he climaxes. And then there’s my bag, and my scars, and all of this horrible terrible anxiety about my body that I have that makes it difficult for me to feel attractive in the first place, and then I can’t relax, and if I can’t relax I can’t enjoy myself or have an orgasm. I’m just a big mess about all of this, and I don’t know what to do about it other than to talk about it, because I know I can’t be the only ostomate in this world who is having this problem.

 

Painful sex is the reason I avoided having sex with Gabriel. We talked about how things had to change about how we had sex, but every time we had sex, he would continue doing the things I told him he couldn’t do because it made sex painful. Not only is my vagina smaller in every way, but on the inside of me, there is now this network of scar tissue, almost like a wall, that Gabriel had to break through the first few times we had sex,  in the weeks following my surgery. The first time hurt so bad I cried, and we had to stop, but I felt like we had to keep trying, and my doctors told me that everything would go back to normal in a year, give or take, but nothing ever went back to normal, and Dr. Ha had no advice to give me. No one really does, I can’t find any useful information anywhere, I don’t really know what’s wrong with me, or how to even fix it.  I am of the opinion that the world does not care about women’s vaginas, or what matters to us concerning them. I’m sure that if I had penis, there would be all sorts of help for me, but I was born with a vagina, so fuck you Rose.

 

I suppose I’ve just been in long term relationships with assholes, and the men I’m interested in now all promise to be caring, and gentle, and to follow my lead, but I’m still too frightened, because  let’s be real, what man is really going to care about anything more than his own pleasure once he’s in there? In those final thrusting moments leading up to his orgasm, I am a receptical for his release, and my pleasure or comfort becomes unimportant as he climbs the mountain to its zenith, and when it’s over, it’s over, and who cares if all I got out of it was discomfort and a wet ass?

 

Gabriel would constantly guilt me into sex. He would make me feel as though I was a bad person for avoiding sex with him. He likes to fuck from behind, and I did too, before my surgery, and before everything changed for me. I love being a sex bitch, it gets me off, it turns me on. I am a natural submissive in bed, humiliate me, piss on me, call me names if I’m in the mood for that (but only when I’m in the mood). It may come as surprise to anyone reading this, but I’m really into rape role play, or, I used to be, when I could have rough sex.  I would tell Gabriel what I was in the mood for, and this would be his cue to give me a violent surprise at some point during the day, but I never yielded easily, I always started out fighting, and this was fun for me. I would try to stay in character, but by the time he had me down and spread out, euphoric laughter would bubble up from my belly and burst into the air, and would be singing for his cock, so you see, it wasn’t always bad with Gabriel. For several years it was almost perfect. He was my best friend.  But then I changed. I couldn’t do these things anymore because of the physical pain.

 

Consider the anus. It is a wonderful little thing, packed with delightfully sensitive nerve endings that react when I have an orgasm. Everything would clench and contract in concert with my pleasure if the orgasm was of the mind boggling variety, and I would get goosebumps everywhere,  and curl my toes. I was never into anal sex, but I was into anal play, but I can’t do that anymore, and it is a loss that I feel acutely, because now, this once very vital aspect of my sexuality is gone forever.

 

I have a scar now on my belly that starts just above my navel, and ends just above my mons pubis, that furry mound of fun where I play with myself. It’s yummy, and the flavor never runs out, and when I masturbate, the fantasies are intense, and I never  have a colostomy bag. My orgasms are glorious, then sad, because I’m alone right now, and I wonder who would want me. Me, with all of my anger, and scars that I pick at to watch them bleed.

 

My colostomy bag is one of the reasons why I stuck it out with Gabriel for so long, and I suppose I should explain the disgusting mechanics of having one. I have a colostomy, and colostomies are located anywhere on the left side of the abdomen, and are called such because the surgery involves a resectioning of the colon, the large intestine. Whatever section of the colon that is still usable, and healthy, is brought through the abdominal wall, then that section is folded down, not unlike cuffing a sock at the ankle, and it is then stitched to the outside of the abdomen, and thus is created a busy new part of the anatomy called a stoma, which is the Latin word for mouth, and that’s just what my stoma looks like; puckered lips ready to kiss, only, it poops and farts at will. An appliance called an ostomy pouch is placed over this, and is held in place with very strong adhesive. When this waste receptacle becomes full of either, what we ostomates so delicately refer to as “output”, or gas, it must be emptied by squeezing it all out, not unlike one of those tubes full of icing, except instead of icing, it is excrement, and there is no tasty cake underneath, just the worst smell imaginable. I hate having to empty my bag in a public restroom, or at someone’s house. It fills me with dread and anxiety. Yes, it is true that everyone’s poop stinks, it is the nature of poop to stink, but the poop that comes out of an ostomy pouch smells something along the lines of a barrel of dirty diapers that has been festering in the desert sun, or maybe a very humid swamp, for several days. It stinks.

 

It was upon Gabriel’s insistence that I spend some time walking about the house nude so that I would come to understand how beautiful he still thought I was, and for all his selfishness, asshattery, and constant drug use in front of me when I was trying to stay clean, I have to commend him for this. He thought it was cute when I farted, and he called my stoma his “sexy meatball”, because that’s definitely another good description for a stoma, as it does also resemble a slice of raw bloody beef protruding from my belly, constantly running it’s stupid little mouth, and making rude embarrassing comments that I have no control over.

 

There are messes sometimes. There were a lot of them actually, as I was adjusting to my new normal. I have woken up to countless bag blowouts because there was a leak. First there is the itchiness, then the smell, and I wake up to heartbreaking realizations that no amount of drug use, and escapism could save me from. I have to get up, and change the bedding, wash what is soiled, and take a shower. I will cry on the inside every time this happens, and up until 2014, or so, I would have these awful intrusive thoughts about stabbing myself in my stoma just to teach it a lesson about being such a disgusting and insufferable cunt, and this sadness drove me ever deeper into a drug addiction that might not have been, save for the fact that I cannot undo my past. Heroin allowed me to escape those moments, and to dream, and imagine that this, and so many other things, never happened to me. I only wanted to escape because at that time in my life, I could not accept who I was.

 

I still struggle with the fact that I have to live with myself, but at the very least, I have accepted what I cannot change; I shit in a bag, and I feel ugly, and undesirable because of it. Gabriel did his best, and nothing can ever take away the tenderness, and understanding he showed me in that regard, but still, he was unwilling to listen to my other needs, and knowing this overshadows any sensitivity he displayed, because the insensitive moments outnumber the sensitive ones.

 

When my Medicade was cancelled I had to start getting my bags from various charities, that, even though they are charities, still charge money, but at the very least it’s somewhat affordable whenever I have twenty dollars scraped together to purchase four bags, which, if there are no messes, will last me a month. What this means though, is that there have been times when I had to wear each bag for two weeks, instead of one, and I have to take whatever is available, and it’s usually the clear ones that I end up with, so my business is visible if I don’t wear long blouses. When I can afford too, I decorate my bags with that pretty, colourful duct tape, and I write things on my bags, or draw pictures on them. But if my bag leaks, or I have to wear the same one for several days longer than usual, it begins to smell, and sometimes there’s nothing I can do about this, so I put on a tattered hoody, and stay in bed, and feel sorry for myself.

 

The leaks, and the adhesive that adheres the pouches to my skin causes problems as well. Sometimes I itch constantly, and my peristomal skin, the skin closest to my stoma, becomes red, and bumpy, and it burns, and sometimes bleeds, or I get a yeast infection, and my skin weeps, thus degrading the adhesive, and my pouch slowly comes undone as the output oozes through, undermining the barrier. I smell awful, and there is nothing I can do about it, as I fumble for the funds to purchase more pouches, and I become angry at the American system of healthcare. It’s unfair that anyone should have to pay for something so vital in such a presumably wealthy nation. I should not go without that which I need. No one should, and it’s a crime against humanity.  I don’t know why the rest of the world doesn’t just blow this place to smithereens because we deserve it, if for no other reason than for the simple fact that  (white) Americans are, collectively, arrogant trash.

 

My father, Dennis, is a wealthy man, though he bitches about money if I need it. He has no qualms about purchasing a $300.00 grill for his pool patio, but I’m breaking him in half if I ask him to buy me something that I really need, like pouches, or if I can’t make a bill, or if I need a pack of cigarettes.  He decided that he didn’t like that grill, so he gave it away to a friend, and bought another at about the same price. You must understand that I wasn’t raised benefitting from his wealth.  He’s a bit of a venture capitalist, and he got lucky. He also never paid any adequate support to my mother Brenda, who he abandoned, leaving her to fend for herself, and four children. He shames me when I need something, and does not believe that mental illness is a real disease, and I’m sure it comes as no surprise that he is a member of the Republican Party,  and that he thinks Donald Trump is the best hope for this country that I have had to sore misfortune to inhabit. He would rather I sequester myself in my home with a towel wrapped around my middle to catch the excrement oozing forth from my stoma, than help me to purchase pouches, because I need to learn a lesson. Yes Dennis, your mentally ill daughter should have to put up with the bullshit fucking hell that is working a minimum wage job in the U.S.A., so that I can still barely afford anything, while you live in a five bedroom house with a three car garage. I grew up destitute, while you hoarded money, ensuring yourself, and your insufferable wife a comfortable existence, while I dine on Ramen Noodles and Kool-Aide.

 

One of his mantra’s is that “God won’t give you anything that you can’t handle”, and this is absurd. The very idea that his Christian god would hand me a silver platter piled high with my own stinking shit, and expect me to handle that, makes me laugh. You know the laugh, it’s more like a bark that sounds how bitter things must taste. But you have to laugh this laugh sometimes because the alternative is tears, and sometime you get tired of crying about how unlucky you have been. Then, sometimes, after I’ve screamed about it all I can, I become quiet, and it’s that angry sort of silence that surrounds you, and fills up the room, reaching out with cold tentacles, and anyone physically near you can feel it, and so I make my misery known without saying a single word.

 

Gabriel would not change certain sexual behaviours, and he made me feel guilty, and he blamed me for why he couldn’t change. He told me that I didn’t put out often enough anymore, and because of this, he would become so ravenous for sexual gratification that his desire would override his sense of delicacy, thus rendering him incapable of demonstrating the physical gentleness that I now required. I realize now that this is victim blaming. He was abusing me, and blaming me for it. He was not raping me, but he was engaging in rape culture, and one of the many things that it teaches men, which is that  men can’t help being sexually aggressive, and it’s a woman’s fault for being a woman. I avoided sex with him because he did not care if he hurt me or not. He wanted what he wanted, and in the end, I could have been any vagina, and in the minds of some men, vaginas are only good for one thing, and being connected to a human body and soul is not of any importance in the face of the one thing that ultimately matters to Gabriel, and men like him. Gabriel is gone now, he is out of my life, that chapter is written, but I am still processing that pain, and examining what the five years we had together has taught me, and I have learned a lot, and am still learning from it.

 

Recently I have needed some validation, So I called on an old photographer friend of mine who have known for twenty years. His name is Mike Draga, and he has taken more pictures of me than any other woman he has known, or will ever know. He is my photographer. Modeling nude, for whatever reason, has always made me feel good about myself. Perhaps it has something to do with the prestige of being someone’s muse, or maybe, despite all the self deprication, I’m a vain woman. Artist are sometimes vain though, and I think that we almost have to be at times in order to deal with the jagged, and cutting criticism of the public, and oh how the public loves to tear anything down because misery love company, and no one knows that better than myself. I also love to model nude, because I feel this need to be honest about who I am, and to document myself, and show how I have changed through the inevitable process of aging, which is something I find beautiful. Decay is beautiful to me, because as one thing meets its end, another thing begins, and this is eternal.

 

Mike came to get me, and as usual, I was not ready to go, because anxiety can strike at any time, and I have Bi-Polar II Disorder, and ADHD (so they say) as well as hypothyroidism, and all these things make doing things, like getting ready on time, a serious chore. Mental illness is physically exhausting, and I know that a lot of people won’t understand this, but those who do, know what I’m talking about when I say that some days I can’t be bothered to get out of bed, so I sleep all day, and dream about all of the famous people I would love to have sex with.

 

Mike commented on how long it took me to shower, and I apologized, telling him that it took me longer than usual, because today is the day that I rinse out my bag. Every other day, when I shower, if I shower, I rinse out my bag a little bit because it makes me feel cleaner, and if I have to extend my wear time because I have a limited number of changes to use, it helps cut down on the resulting miasma that becomes an aura of stench by day ten, that apparently only I can smell most of the time. Mike said that sounds like it must be terrible. I don’t how you can live with that thing hanging off of you. I tell him that I’m used to it, as I think to myself, strike one Mike.

 

Once at Mike’s house, we went to his studio, I took off my cloths, he adjusted his camera, and I began modeling for him, just as I have always done. This man had been seeing me nude for 20 years now. He has, through the lens of his camera, documented me in nearly every which way there is to document a woman like me, and I would like to collect the best of these images, and create a timeline of Alizarin Rose, highlighting my existence, proving that I was here, showing where it is I started with him, all the way up to the me of now, exhibiting the changing me to anyone who wants to see it. As I am thinking these things,  Mike said to me, I have known you since you were 16, and now you’re going to be 37, and your breasts, they’re so pendulous now, and they used to be so pointy. And there is was, just in the very inflection of his voice, and his choice of words, the way he framed the very statement he made, and I heard him say, between those words; Rose, you know, you used to be pretty, but now you’re getting older, and it’s beginning to show. This crushed me, and all the gusto and inspiration I had to be me for him died like a flower in a false spring when frosty winter returns. Strike two Mike.

 

Strike three followed soon after when he made it very clear to me that he did not want to take any images of me below the waist because he said that my pouch was a distraction, but then, he has always made it abundantly clear to me that my pouch is disgusting to him, so perhaps strike one came a while ago, and this modeling session was just the final straw. It was in that moment that I realized something that I have always known about this man who is in his mid-sixties; Mike Draga is an asshole who exploits young women for his own pleasure, and he has been exploiting me since I was 16 years old in some fashion or another, and I have allowed him to do so, but no more. I will no longer model for this man, and though I have known him for 20 years, I’m not sure that he is truly my friend, as he was one of the many who abandoned me when I was sick. He never called to check in on me, never came to see me when I was in hospital, he never even sent me a get well card. He just slipped away for that year when I was so alone, and could have used a good friend, because the two people who did see me through that nightmare were only interested in pilfering my pain medications, and I was so convinced that they loved me.

 

When Mike made that comment about my breasts, I tossed my hair over my shoulder, struck a very clichéd pose, and said to him, Mike, I’m almost 40 years old, I had a baby 9 years ago who I breast fed, and I had cancer when I was 32. I think I look fucking awesome, and you’re lucky I’m here.

 

I will not let another man have my self-esteem so easily anymore. I came to Mike seeking validation, and this he knew, yet here he was, cutting me down, and I could not, would not, allow him to have that satisfaction. You, my oldest, and dearest friend, are cordially invited to suck this bag of dicks, because I, my love, will have the last fucking word on you.

 

What Mike said to me that day hurt me, because it was meant to hurt me, and I don’t know why, but he has always done this to me, and I don’t care anymore, because I will not be made to doubt myself from outside sources. When people use words to manipulate, insult, or otherwise inflict pain upon me that, blossoming sting only strengthens me, and then I am ready to fight, because I attack when attacked, and I am attacking now. All of the pain that I have experienced in my life has only sharpened my anger, and made me more intolerant towards abuse of any kind. I will turn my tears to daggers, and stab you in the fucking heart if you hurt me.

 

I don’t wonder anymore why those who have claimed to love me the most have been the ones to abuse me, and hurt me the most because I know why. I have been verbally abused my entire life, starting with my mother Brenda, and she is an insufferable harpy from Hell. It is because I have always been abused, that I settle with abusers; it is a relationship that I know how to navigate because it is all I have ever known, and I am guilty of it myself, and I own up to it, and I am sorry that I have hurt people who did not deserve to be hurt. This is the beginning of change. This how one changes I suppose, through self-realization, and admitting that you also have been wrong, and done wrong, and then never doing that wrong thing ever again, otherwise, you’re not sorry. I hate the way if feels, admitting that I have also been a horrible person, but that’s why I’m sharing all of this with an audience, so that we can help one another to evolve, and become better people.

 

I am an artist, and because of this, I have a responsibility to share myself with the world. My narrative is not unique, as it is the story of so many other people, but what is unique is my ability to express that narrative, and give it a voice, thus connecting myself to others who may not be able to voice their loneliness and pain. Because of me, someone else may feel less alone, less like a freak that could never love anyone, or be loved in return, because right now, that is exactly how I feel. Or maybe someone could feel inspired to share their story, and so join this chorus of voices that I am now a part of, singing the same song, and if I could just reach even one person in this way, through writing, and painting, and expressing all of this hurt I’ve been living with for so long, then I will have done everything I was ever meant to do in this life.

 

People who abuse do so because they are weak, insecure, insensitive asshats. They are sick, and should be pitied, but not helped, because they can’t be helped. If someone is hurting you, tell someone, or walk away if you can, and don’t ever look back, because it’s not you, it never was, it’s them, and you need to know that you are worth more than that, and you are more beautiful than you will ever know. You can do it. I believe in you.

 

I hate my colostomy bag. I’m not happy, or greatful that this miracle of modern medicine has allowed me to live. Sometimes I wish the cancer had won. Sometimes I wish that my suicide attempts had panned out, because if I’d tried harder to kill myself then at least I would have succeeded at something, but then I wouldn’t be here, and it’s important for me to be here, because people do love, and cherish me, and those people need me. The fact that I hate my bag so much is why it’s important for me to model nude, and show it to the world. I’m not alone, there are thousands of people with ostomies, and it takes strength to do the things that terrify you.

 

I know how hard it is to face that little goblin hanging off of your belly, and accept that it is what it is. I know how hard it is to understand that you are no less beautiful now than you were before you had to get an ostomy.

 

I am no less beautiful now than I was before I had cancer, and started getting old, because I am still me. I am still Rose, and you are still you, and we deserve to be loved. We are worth it, and if you’re a lonely person reading this tonight, I want you know that I really, and truly love you. You’re not alone.

 

 

 

14 thoughts on “Cancer, Colostomy Bags, and Beauty

  1. People tend to use the word love because it is the nicest thing to hear, the easiest thing to express, and kind of like a universal word that holds a lot of complex emotions and wraps them in a neat little bow. People can’t express what they’re really feeling because of the fear of reprisal. If I told you I didn’t like something about you, a number of things may or will happen:

    1. You’re going to ask why and then I’d have to explain and then things get awkward.
    2. You’re going to light up like a Christmas tree and things are going to get mean.
    3. You’d be open to a conversation about it (unlikely) and then we converse.
    4. I get whacked over the head with a bat.

    People have gotten to the point in the human timeline when they no longer know how to create effectively. As it stands, we have the greatest communication tools in the history of mankind, and all we use it for is selfies and likes.

    As for your changing body, that’s going to happen and it takes a mature man to have grown and changed just like that to appreciate that change. The problem with photographers, in general, is that beauty becomes a commodity, and not a thing inherent in nature. The vast majority of photographers will take STUNNING pictures of melting icebergs, beautiful rain forests, and breathtaking waterfalls. But it’s those that take pictures of bums sleeping on park benches, Ethiopian children with distended stomachs, and cancer victims in the hospitals that have their fingers on the true nature of the world and aren’t afraid to show human frailty and weakness.

    Your journey has been long and hard, no question. Take pride in your survival. Turn what may have been otherwise ruined into the strength to turn things around. Someone who has been to hell and returned is oft time stronger than those of us for whom life has been pretty much a cakewalk by comparison. But there are those of us who will always reach out and not pretend to understand 100% what you’ve been through, just a matter of sifting through the mire to find out which of us that is. It’s not always apparent, and given your nature may sometimes seems suspicious, but we’re out here; and for the most part, we want to make the world better, one person at a time.

    Liked by 1 person

  2. Anyone reading this who cannot see your obvious beauty and strength is illiterate in some way. Perhaps socially they are stunted more than a little? You are the essence of what it means to be a human female in modern society. And while I am sad that you had a seriously crappy moment with Draga I’m glad you had that moment because I got to read about it and you are the lioness of us all. Selfish of me though that may be.

    Liked by 1 person

  3. I had cancer myself and it eat the inside all out made me weak and innoain. I try to deal with my bag as much as I can. I’m sorry that you have Cancer I understand that part so God Bless you stay strong stay brave

    Liked by 1 person

      1. You are a fighter so don’t give up I’m the same in free of cancer but still have the bag on I try not to let it get me it’s apart of whom i am .don’t let that bag take you from who you are as a person

        Liked by 1 person

      1. You should be proud of your self you have to start some where in order to get some where. Even when your tired and want to give up think of all the hard work you done. It’s awesome that you want to do it for other people I praise you on that but make sure you are doing this for you cause the only person you need to make proud is the person you are in the mirror…

        Liked by 1 person

Leave a comment