“The Strongest Souls are Seared by Scars” - Khalil Gibran; I know, cheesy way to start a speech; almost like I’m writing one of those papers I hated back in High School. But this quote has meaning to me; a lot of meaning. In some of my darkest moments; this quote has helped me rise from the deepest depths of depression.
My name is Saleem Juma; I’m 24 years old and I wear an Ostomy Bag on my Stomach. I like to think the bag; nor the disease that forced it upon me; define me as both a man and a person. I’d be lying if I said it didn’t have MORE than a “bit” of an impact on my life though. You see I don’t just wear an Ostomy Bag; the disease that came with it has impacted almost every aspect of my life; from the perspective I use to view the world around me; to my interactions with people and the career path I chose to take.
I was diagnosed with Ulcerative Colitis at 16 years old; upon returning home from Military School. However I had suffered from symptoms for years before that; the earliest time I remember being at 14. The symptoms I speak of I go into detail about; not to gross you out; or turn you away from my cause but to really… impart what it was like to feel what I felt; live like I lived as much as I can. I don’t hold things back anymore because for much of my life beforehand I did so; and I did so in gravest error.
I was bleeding from my bum; going to the toilet 10 – 20 times a day. But I refused to speak about it for YEARS; because the risk of what I saw as embarrassment was WORSE than the pain or inconvenience I was experiencing. I simply lived the best I could in that time period; the things I would miss out on and not experience not understood until I was much, much older.
But I’m getting ahead of myself; see you must understand it wasn’t just the physical symptoms that I speak of; it was the Mental Symptoms that I fear most people don’t understand nor see the long term permanent and powerful effects of. The Depression and Anxiety I experienced everyday my Sophomore year of High School still today haunts me. I did every thing I could to try and alleviate them (and being that I was 15 and didn’t understand anything that was going on; I did so in the most unsafe ways possible); ranging from extremely risky behavior, to drug and alcohol use, to fistfights at the slightest provocation.
Eventually my behavior led to me being “sent” to a Youth Military Academy up in Bremerton (as I still refused to disclose what was ACTUALLY going on with me); now I use sent as a loose term. The Young Men who would become my Platoon Mates ranged from a diverse group of Gang Members and Drug Dealers to kids who simply skipped class a little too often; we were offered a chance to… redeem ourselves; not only in the learning and application of self-discipline and physical fitness but also in a more tangible form of 8.5 High School Credits; earned in a short period of only 6 months. However the Academy had a rule; only those who Volunteered would be accepted; meaning you could actually “technically” leave at anytime, but once you did… The Doors of Redemption would shut behind you forevermore.
My time at the academy was actually one of the greatest periods in my life. I had brothers that I lived with, trained with; and formed a bond that would never be forgotten. In fact; because I could not run away from my problems; I started to succeed. It was here I learned of my capacity for Leadership; for making a difference. Becoming one of our first Squad Leaders at 16 (being at least a full year younger than anyone else in our platoon, with the oldest being 19) and having to learn how to not only work with these guys… But Lead them and help them succeed. I became Student Council Vice President, Leader of the Tutoring Program (and helped a group of guys earn the grades necessary to graduate; as they would have failed out of the Academy without my help). Being able to see myself have tangible success despite what I thought was some sort of curse on my body alleviated the depression and had a strong effect on my mental state. The point is here at the Academy is where I learned that one person could make a difference in people’s lives. I still even today think back to that time during times darkest in current days.
The Sickness Getting Worse:
Unfortunately after returning home and graduating the Academy; what should have been an easy ride after making it through (I started with 50 Platoon Mates and finished with only 37 making it graduation); things started to get much worse for me. The Symptoms could no longer be simply ignored; I remember the first day I had to explain to my father that I was bleeding out of my bum and going to the toilet 20 times a day. I was so ashamed I remember puking twice before he picked me up from school.
It's part of why I do what I do; we feel such shame in our illness we fear even coming out about such things; where else would a completely illogical conclusion like that come from? It would come from not understanding a condition which is hushed up and taboo in our society; a disease that nobody wants to talk about because it involves bathrooms and sensitive subjects; a disease which destroys the lives of those it comes into contact with; NOT because it kills them but because they are so ashamed to talk about it.
But I’m getting ahead of myself. Father took me to the Doctors ASAP; and… Well I’d never had a Chronic Disease; I didn’t understand it wasn’t just like… getting a Cold and getting over it. Or the Flu or really anything where you don’t just go to the Doctor; get some Meds, take them for a few days and BOOOM you’re all good. When they gave me the first of the drugs… Sulfasalizine and Mesalamine I just thought; hey, I should have talked to a Doc about this years ago! Damn all I gotta do is take these pills and it’s over? Unfortunately the Fates would not have been so kind; though the Doctor explained Ulcerative Colitis was a life long illness; he assured me it could be controlled. I never bothered doing my own research because I’d lived a Charmed Healthy life up to that point (other than the Colitis symptoms).
The Medicines, The Steroids and Immunosuppresive Drugs:
I took those pills for the next 2 years; and in all honesty they didn’t do shit for me. Now I’m sorry to curse like that but it still gets me emotional.
I still had to go to the Bathroom 10 – 15 times a day and faced much discomfort. The disease only got worse; I remember my first year out of High School; a time which I should have been happy; a time on the cusp of adulthood and joining Society independent of my Parents; I saw all of my friends going off to college and knew I was too sick to ever join them. Matter of fact… Let me tell you a story to really drive home how bad it became, in spite of the Doctors telling me that it could be “controlled” and was really “nothing to worry about”.
My best friend Schmidt at the time was starting his freshman year up at Western. Now I didn’t start driving till I was 19; had to take the Metro everywhere; so this was my first chance for a real road trip with my buddies. It was me, my best friend Ryan, his girlfriend; and our other friend Bobby. These guys were my best friends since my Junior Year, and being that I had trouble getting close to people you’d think I could actually talk to them about the Medical Troubles that I was having.
Anyways; it was Schmidtys birthday and we did what most 18 year olds do in college, we threw a massive party. However.. 151 Rum doesn’t go good with stomachs in turmoil; a fact I learned. Harshly. As usually happens at House Parties, the Bathroom was in rather, demanded use. And when you have Colitis or Chrons… When you gotta go; you go. If you don’t? Well you… Risk… “losing control”. My best friends spent that night having the time of their lives; I spent that night hiding in the woods trying to regain control of my bowels on a fucking college campus terrified of the embarrassment that would happen to me if I was found.
This may not seem like that big of a deal; after all I wasn’t dying right? I was just going to the bathroom like 30 times a day, having to get up every morning at 4 AM and chug copius amounts of coffee to empty my bowel and not eating until I came home at 10 PM (I was working 60 hours a week at 2 jobs and going to school full time taking night classes). My Anxiety got so bad I literally had eyes that twitched when I walked into a room with people in it; I developed bloody ingenious methods for hiding all of it; the sickness, the anxiety ALL OF IT. I’m actually appalled I managed to keep it all together at the time, it was simply part of the self discipline I had learned at the Academy. I will not lie to you; I wished for Death many, many times. Just because the Disease was not killing me at the time did not mean that the Mental Effects were not killing me. The things I did while I was drinking and fighting and partying trying to forget what was happening to me? I’m surprised that I stand here before you today.
You might ask; Why didn’t I seek Medical Care? Or ask a Doctor what the hell was going on with me? Oh I did; they put me on every Medication known to man (that’s what it felt like anyway); I took Cortiscosteroids that made me not sleep for days at a time and bloat like a fish (no really, check this picture out; that’s what I used to look like, it terrifies me because I don’t actually look anything like that). I took Immunosuppressants and Biologic Chemotherapy that shut down the immune system that was wreaking havoc on my own body. None of it worked, it simply would not do anything. At this point I was barely holding on, breaking down into tears at random times, contemplating jumping off a bridge, you know the usual 19 year old kid stuff. Finally things came to head.
Now… I’m one of those more unique cases because I uh.. “chose” to have surgery. Now when I say chose I mean that in the absolute loosest term possible; my day to day was literally awaken and be in pain, spent half the day in the restroom and the other half trying to figure out what the hell I was going to do with my life if I couldn’t step out of the house without knowing every single restroom within a 5 mile radius.
When I say chose I simply mean I wasn’t going to die at that immediate moment. And for someone at that age, my age to choose to have: and let’s be honest here: “a permanent poop bag attached to their stomach for the rest of their lives” things must have been pretty tough. And now finally I understood the choice I was making, that there would be no going back; EVER. Even today when I go to the hospital I get nurses and Docs both asking me when the takedown surgery is; when I’ll be “normal” again. When I tell them the bag is permanent the look of pity in their eyes is only too telling what most people still thing of what an Ostomy is…
I remember that day like it was yesterday… April 13th 2013… My parents kept asking me if they were sure this was what I wanted, all I could think about was how if it didn’t work or it was to good to be true I didn’t want to fucking wake up from that surgery. Not cuz I was weak or afraid you understand; but because I just couldn’t do it anymore. I couldn’t fight anymore it was all just too much. And then it happened; I was put under and when I awakened… for the first time in 5 years I no longer felt pain. Seriously I walked into that hospital still in pain, there had been no rest, no true relaxing, no real “break” from the paid until I woke up from that surgery with a bag attached to my stomach. It’s a funny feeling to look at a bag of your own shit on your stomach and be feeling happy about it rather than sad. As I said being that I elected to have this done to me; I’m a rather unique case.
Now as I said I was Unique in that I had my bag placed on me electively. The other 6 surgeries that followed, including the one where my intestine twisted around itself and caused another 9 inches of my small intestine to die off in bowel necrosis; as well as the over 70 hospitalizations in the last 5 years has been the non elective part. But I don’t care, that decision to have a bag placed on my stomach gave me my life back; I stand here before you today as a result of that surgery.
Now…… Finally we get to the piece where I speak about the Advocacy work that I do. And the reason that I do it; which unfortunately wouldn’t make any sense if you hadn’t heard my entire life story back there 😊. I had to put all that in there because this isn’t just some cause I thought up one day; everything that has happened to me on this Great Journey has led me to this point, led me to what I Speak about, why I model, why I fight every single day to bring this disease and this condition out of the the darkness and into the light of day. Did you know people actually choose death or Colon cancer rather than see one of these bags get attached to their stomachs? I’m not shitting you; Farrah Fawcet died from her Cancer rather than deciding to get “the bag”.
Now… I had already been doing Modeling off and on when I was 18, what I was making at my regular job wasn’t enough to pay the bills; nor all the times I was fired for extended hospital stays and missed work. It was actually an accident that I ended up in the industry in the first place; the girl I was Dating at the time was in the Modeling industry and I had gone to one of her Runway Shows as moral support; her agent liked me and said I was very attractive as well as having a “unique look”. I didn’t know what the hell that meant but my girlfriend convinced me to take a job; I made more in those 2 hours than I normally made in a week so I kept doing it; If only to pay bills (I won’t lie though, did wonders for my self confidence, since I was one who may have talked big but I had plenty of self esteem issues myself).
I have to interject a story at this point to kind of help explain things: I was at a party with the ONE MALE FRIEND I knew at the time with an Ostomy (his was unfortunately given to him in prison and he had MANY more issues than I did). Anyway he was telling me about the first time he hooked up with a girl after surgery and how when he removed his shirt she told him to “put it back on, because it grossed her out”. And I said; “Bro you told her to screw herself and walked out right?”; and he said “No… I mean I should have expected it”. I couldn’t stop thinking about that; what I would have done in said situation. I hadn’t dated a whole lot after surgery and in all honesty I mean I talked a big game about being tough and loving myself no matter what but… Was I sure? Would I do the same thing? The idea of going back into Modeling and doing it IN SPITE of having a bag started to come to me; as well as writing and speaking to help others. However I was still afraid; I mean.. What if Directors and Agents told me I was “gross” or wasn’t right for a part? I mean I’d been rejected before but I wasn’t sure how I would feel.
Final Surgery and Going into Modeling:
So.. I didn’t really do anything UNTIL my most recent surgery where they took out the 9 inches of my remaining small bowel. This time I almost died, matter of fact when I finally stopped screaming due to the 5 doses of Dilaudid straight through an IV to my bloodstream (and no I’m not exaturrating I really wish I was); I saw the surgeon and asked the docs why there was one there and the response was: “Well kid, unfortunately your remaining intestine has twisted around itself and part of your small bowel has died, if we don’t take it out and untwist the thing, more will follow and than you’ll die as well”. I remember being high as shit and thinking when the heck is this all just going to be over? When is Saleem not going to be known as: “hospital guy” or “the kid who’s always in the hospital?”. Now it wasn’t until I woke up after surgery that I had the epiphany and I’ll admit there was some selfishness to it; I had to leave a legacy. I didn’t want to pass from this world without having even made on mark on history; without even having changed one life. So I thought about how I could do that and I remembered a blog I used to read when I was mentally prepping myself for the original surgery when I was 19; a woman named Jessica Grossman fashioned herself as a Lingerie Model despite having an Ostomy Bag and it worked out pretty damn well for her. Not only that as I thought about it I remembered how much her personal blog inspired me; and I said to myself “Hey, I still have connections in the modeling industry, this might actually be a good idea”.
Getting the Blog Started and Moving into Modeling:
The Blog Part was actually easier than I thought; I didn’t really understand website building or Coding but luckily for me I had friends in every different kind of industry; one of my more recent acquaintances was adept at coding and website building and built my entire website for free. I started a GofundMe to “Become an Ostomy Fitness Model” and raised 3300$ (which I then used to Market both myself, the blog and reach as many people as possible both online and off).
Surprisingly it was the Modeling that was tougher to get back into; because many jobs required either your shirt off (making it obviously harder to fit in to that role) or even something which seems easy (like tucking your shirt in); was made harder by the fact that I now had the bag. I suppose I could have lied about it in order to garner more jobs, but the entire point of doing what I was doing was to raise awareness about the Ostomy Bag and the plight the taboo diseases had caused.
Suffice to say it was not an easy start; Agencies like Seattle Models Guild would respond negatively towards me and my cause; saying and I quote: “You don’t really fit the jobs we focus on or what we’re looking for in the industry”. It took me quite awhile to find representation and most of the gigs I found in the interim 6 months were Freelance gigs that I found of my own volition. I got so good at Freelancing and finding gigs myself I never actually stopped; leading to the tenacity that developed into me becoming Mr. Washington State and competing for Mr. United States.
But again I’m getting ahead of myself; Though the interim period was difficult and I found much Rejection I found support in some of the Ostomy Community Online; who loved what I was doing. Though the bigger organizations like the CCFA and some of the bigger “Internet Celebrities” from my community would refuse to respond to my messages or cause I managed to find a way to get myself noticed anyway. Luckily for me I had much experience in not taking things personally; I mean I had for most of my Teenage and Adult life been rejected by many things I had tried to go for; both in Professional
Aspects and things of a more Personal Nature. I sent out messages, emails and contacted every Social Media page of the local News Papers that I could. They ignored me for ages; but finally my tenacity (or some would say being like an annoying mosquito), payed off. Seattle Metropolitan Magazine, NW Asian Weekly and a few other local Newspapers did stories on me. I also studied as many Social Media and online marketing tactics as I could; made connections with new magazines that were starting up, beginner bloggers and others who were rising quickly and got as many of them as possible to support me.
This all grew my support base and allowed me to garner enough support online and in general (along with doing more and more shoots) to raise both awareness and interest in my cause; and attract the attention of not only representation but the chance to compete for the Mr. Washington State Title. When I applied for it; I still remember my feelings on the subject where more of a “Hail Mary” than anything else; it was just a “Why Not?” rather than actually thinking I was going to be the one who got the Title.
Becoming Mr. Washington State:
Strangely enough I ended up being the one who earned the title and put myself in the running as the possible future Mr. USA. I’d never competed in a Pageant before; I’d always assumed such things were for attractive people, not the likes of me. But I knew that by doing this, I could show people that I WAS beautiful; despite having a bag on my stomach. I could… even show myself that I was worthy of such a thing; that I could have that Self Confidence and Self Esteem; because again even though I talked a big game at the time; I didn’t personally have that Self Confidence either.
There were a lot of things that I had to do for the competition ranging from Social Media Challenges to going to New Orleans and fighting for the Crown in person, to bring title and Crown back to Washington State. Now it was the Journey that helped me understand that the Cause I was fighting for wasn’t just for myself; what may have started as a desire to simply leave a legacy for myself and garner my own personal fame had become a desire to change the way an entire industry and the world itself viewed both a disease and a disability and by association ALL “Taboo Diseases” (including mental disease like Serious Chronic Depression and Social Anxiety, which I suffer from in a high capacity as well).
I didn’t even make it to the actual competition; I had just finished a Lottery Commercial in Seattle; had my Plane Ticket and suitcase all ready to go; when I started to feel so sick I could barely walk. I ended up in the ER that night; watching pieces of the contest I was supposed to be representing my State in; on Instagram.
It hurt a lot at the time; as I had spent the last year training both physically, socially and mentally to get up on stage and compete (really I had a trainer and we went to the gym 6 times a week, to the unfortunate discomfort of my doctors; and though it’s not something provable I’m 99% sure the massive amounts of overtraining I was doing put me in the hospital more than a few times.
But the point is, regardless of being able to keep my title and the challenges that I faced, on the journey itself I have changed lives; including my own. I was once so suicidal I did not desire to live; as were others who contacted me online; seeing both my modeling work and the articles that I was writing. It’s things that these people said to me that changed my life and desire to live; things like: “You brought me back from the brink of suicide”, or “I finally was able to talk to a girl because I saw that you were so confident in what you were doing, and it turned out she liked me back”; I wish I could have told them that really… It was them who saved my life. Not the other way around.
The Aftermath and What I’m doing right Now:
I was always irritated that there was no “Youth” perspective of having an Ostomy bag. Sure people wrote articles about dealing with “how to change a bag” or “how to go back to the gym after surgery”; when I wrote my articles I wanted them to not only reflect actual experience of having a bag and living in Real Society with it; but of the real issues that came along with that. So my articles ranged from more controversial topics such as: “Hooking up with an Ostomy, how Honest should you be?” and “What to do when need to empty your bag at a house party and you have no bathroom access; a collection of tips relating to not having immediate bathroom access in all aspects”.
I wrote the way I do and about the aspects I did because I wanted to show people they didn’t just have to live a certain way and in a certain light because they were “Disabled”; was I also raising awareness to help those who did not suffer from such conditions understand those of us that do? Sure I was; but it was also important to show those like me that they could live the way they wanted to; wether that meant going off to a University far from their family or even something like going to a House Party; something totally normal that seems innocuous and like it wouldn’t be an issue; but… for someone like me could be quite vexing and anxiety inducing.
So… Now I do a lot of things; I do a ton of writing for a number of different blogs and Modeling for a number of different Marketing Materials. I also do speeches like this; I’m still not totally sure where I will take all of this, wether my career path will lead to Writer, or Motivational Speaker or… even Underwear Model. I’m not sure, all I know is that whatever I can do to help those who are suffering and see themselves as “Gross” or “Rejected”; and do what I can to show them that they don’t need to feel that way. As I was once someone that felt exactly like that and no longer does.
How You can Help:
You know I feel like we’re bombarded by… all these Causes online, and all these articles all over our Social Media and those silly chain emails and messages. We’re so Over Stimulated by everything sometimes I’m surprised my head doesn’t simply explode when I jump on my computer in the morning.
You can help massively by sharing these news articles about me and my cause, telling the many Media connections you might have or friends that may be able to help with Speaking Engagements or Opportunities. Because I feel like this is what connects us, not some article online; but real human engagement. It’s not there as much anymore; and it’s sad because in an Overstimulated world THIS is what sticks out and gets people’s attention.
But more importantly than any of that stuff…. If there’s only one thing you take home from this; let it be the capacity to be more understanding of those with my condition. The number of times I’ve been called lazy or been told that I was “faking it” to get out of work or attention or whatever the case may be… I may be strong enough to brush off such things now but I know plenty that are not and it hurts their very souls over and over again. So please, take home that understanding and help us raise the awareness that these so called “bathroom diseases” are not to be so taboo in honest discussion. But to be understood so that we don’t have more people that fear speaking about their potential symptoms; I would not have any more of my people suffer in silence.
Much Love for hearing me out. Let’s defeat the challenge of Taboo Diseases; together. 😊