Part 1 Before. That smiling, tan, young lady you see to your left was me in summer of 2014. We'll call her, pre-Crohn's Erlina. Let me see if for a a second I can close my eyes and remember that summer, almost a year ago now.. Yes.. okay.. I was working steadily and for the first time in my life pretty much paying off all my own bills without needing too much extra help from my mom. This was a big deal for me, as a Sagittarius, I tend to be very independent. When I was 18 I moved to Philadelphia on my own to go to school at Temple. This is pretty standard in the U.S, but for my conservative, traditional, Dominican family... I was one of the first if not THE first to do such a thing. By my Junior year, I had stopped coming home summers to stay in Philly and work or do internships at local theater companies. I felt my hometown of Reading, PA had very little to offer me, and I had minimal interest in ever moving back or having a life there. It just didn't feel like an option. I work in theatre, as an actress, director, and playwright. I do lots of other things too, but those three have always sparked my interests the most. So, of course, Reading with its underfunded community theatres was not a place that I wanted to spend more than a weekend. When I graduated from Temple in 2012, I immediately found a 1 bedroom apartment in West Philly that I absolutely adored. 3rd floor walk up, a little run down, but cozy.. and all mine. The whole independence thing was at its absolute finest. Although a week later I promptly adopted my darling kitty cat Molli J when it got a little bit too quiet. Her brother Desmond joined a year after that.
So, back to summer 2014. Pre-Crohn's Erlina. A typical day looked something like this, and if you are not someone who enjoys reading schedules I'd say skip ahead. Basically I was busy. 8am: Wake up, breakfast dress.. typical morning routine yada yada. 930am: Working the Daycare at a great cross-fit gym in Center City. That was an interesting culture to observe. People who loved going to the gym so much that they made their whole lives about it.
Some days I only had 2 or 3 kids at this Daycare gym, but some days I could have as many as 6 or 7 and they were usually all toddlers and babies. Challenging, rewarding, the whole spiel. I didn't hate going to work which has always been something important to me. I've always loved working with kids. Having that open and excited spirit is catching, and I loved when I would lose myself in moments of hide and seek, or coloring pictures of spiderman.. it is almost like a meditation, so as a job, I have always loved it.
1230pm: Kick-ass crossfit workout. I only started about 6 weeks before I got sick, but in that time I felt my body getting so strong, exercise can be truly addicting. I never saw myself as someone who plans to go to the gym.. I've never been very athletic so actually sticking to a workout regimen and seeing results was a huge accomplishment for me. The fact that it was free wasn't too shabby either.
2PM: Around this time, I would head to the computer lab at Temple CC and take full advantage of my alumni status. Here, I would work on my play that was produced for Fringe 2014, Morir Sonyando, which was being produced by my home theatre Power Street. I'd also take this time to relax, watch a fun show if I could like Mindy Project. Then around 530/6 I'd head to North Philly for rehearsal with my crew. 6pm: Rehearsal! Yay! I was acting in the play that I written. A huge dream of mine that was coming true. 9/10pm: Head home and do it all again the next day.
I write this little schedule out for you because along with my independence, my busy, satisfying schedule was the impetus for my excessively positive facebook status updates proclaiming that life was amazing. On top of this, I was being offered directing positions at really great companies, I was going to parties, I was going to amusement parks, and trips to the beach with my friends. I was dating. I wasn't like one of those people who only realizes how amazing things were in hindsight, everyday when I left my house in the morning I'd breathe the fresh summer air and think, "Things are good, and they are only getting better."
Part 2 "You have Crohn's Disease." Crohns's Disease? What's that? Well, I'll tell you. It's the devil is what it is. You know that scene in The Waterboy with Adam Sandler where his mother continually calls things "The Devil!" Well, if you don't, I suggest you look it up because it is hilarious. Everytime I hear the word "Crohn's" I think of Adam Sandler's mother going, "Crohn's Disease is the DEVIL! devil..devil..devil." With the last three Devils fading away into the abyss.
Okay, so what is it really? It is one of a few IBDs (Irritable Bowel Disease). The other big one is Ulcerative Colitis which effects the large intestine, and Crohn's effects the small. It is an autoimmune disease, which means that my immune system is drunk and thinks that my intestines are not a part of my body and attacks them. This causes horrible inflammation and pain, irreversible damage to the intestines, blockages, and phlegmons, and fistulas, and a bunch of other words I never thought I would need to know. For a lot of people, they get (TMI) insane diarrhea all day long and go to the bathroom like 40 times a day to the point where they can't even leave their house. I guess you gotta be thankful for the little things, my Crohn's never manifested in quite that way. Yay?
"You have Crohn's disease." I had never really heard of it before. Except for maybe some commercials on TV advertising medications. I never paid attention to them. Now whenever I see them I get so pissed. Those people are way too smiley, bright, and sunny to have the same Crohn's that I have. Because, as I was hearing these words, it was maybe about 3am on September 12th 2014, I was laying in a hospital bed where I had been since about 10pm the night before on September 11th, with morphine in my system combating the mind-numbing pain in my abdomen that had brought me here in the first place. Just a few hours before that, I was on a stage performing to a packed audience. My dad and my uncle, and a bunch of my sorority sisters had been there and I had been on cloud 9.
But I won't pretend. For days, if not weeks, I had been having really terrible stomach pains. They would go in and out, I would breathe, do yoga and that would help, but there was no denying something was up. But I was hard headed. I had a show to perform. I was working, and not about to go jeopardizing things by going to the doctor! Who had time for that? I can almost remember the exact moment where things went from bad to almost dead. I saw my dad and uncle after the show from on stage. I jumped off the stage to go give them a hug. The moment my feet hit the ground I felt a stabbing pain in my lower right abdomen. But I continued to ignore it. Over the next 30 minutes or so of saying hi to all my friends and family, taking pictures etc.. the pain got steadily worse, and I felt myself getting hotter, and not in a sexy way. My girl G and I had plans to grab drinks after with a friend and supporter of ours and I did something I hardly ever do and told them "I think I'm just gonna go home." I still had the idea of going Home then. ha. What I didn't know was that in that moment most likely, my small intestine had ruptured and all the 'stuff' inside of it that isn't supposed to go anywhere else, was making its way into my abdominal cavity (spiking my fever to 103.) and most likely killing me within the next couple hours if I didn't get some antibiotics in me and the bacteria got into my blood stream.
Long story Longer.. Also, long story getting more and more depressing. It's weird thinking back and remembering this now. It feels like a movie in my mind. Pre-Crohns Erlina was really close to being full on Crohn's Erlina. The pain in my belly went from bad to worst thing I've ever felt in my life in a matter of minutes. I sat in G's car as she was driving me home with our friend L, and every bump in the road felt like a bullet in my belly. Reason began to leave my brain. I thought maybe my appendix had burst. I called my mom laying in tears in the back seat with G and L's anxiety building and building. You know how it is, when you don't feel well you call your mama. Of course my mom says "GO TO THE ER." As any self-respecting person would. I needed that command from her because I may have still just gone home. If I had gone home I would have ended up in an ambulance that night. And that's best case scenario. I don't want to think about worst case scenario. At the time however, I was mostly concerned that we would have to cancel our show. The idea of going to the ER and possibly having to cancel our last weekend of shows was incomprehensible to me. Of course though, my friends and family were a bit more rational. And that brings us back to 3am.. G and L stayed with me the whole time. I'll never know how to repay them, and I know that in that moment they went from being friends to being family because when someone sees you in that state of despair and holds your hand and stays strong for you.. Well, nothing in the world could mean more.
"You have Crohn's disease." You'll have to stay for a few days. You are not allowed to eat or drink anything for the next few days (If not more). You may need surgery. You may need surgery. I wasn't hearing any of that. All I was hearing was, "We are going to have to cancel the show." The moment I realized that I was going to be stuck in the hospital and the show would have to be cancelled my heart gave out. It felt like killing my baby. Up until that point, the pain had me tearing up, and I certainly cried a little bit.. but in that moment, I knew what it was to sob, ugly, uncontrollable sobbing. Like a big 'ol baby. Goes to show how much more damaging emotional pain can be than physical. But I'm glad I did. I think that if I hadn't let myself cry, REALLY ugly cry when it was due, I'd have ended up in much worst shape. If you have to choose between crying and not crying, cry. It's like pouring alcohol on a wound, it might hurt more for a little but you'll heal better.
Part 3 Now what? In less than a year, I was hospitalized for over 60 days all together. I've had three surgeries, about 30 cat scans, x-rays, and MRI's, I had my stomach tapped 4 times (with a long ass needle) with up to 5 liters of fluid removed at a time. I've been on Morphine, Diluaded, and every Oxy their is, I started getting Remicade infusions every 6 weeks for 2-3 hrs at a time.
I stopped working, subletted my apartment, and moved me and my cats into my mom and stepdads place. I stopped seeing and creating art. I had dark times where I couldn't get out of bed for up to 10 days at a time. Where I was too weak to comb my hair. I"ve cried by myself and I've cried with a loved one holding my hand. Hell, I used to schedule crying. I've experienced incredible generosity, love, compassion, and kindness from friends, family, and even strangers. I've learned to appreciate the good days on a whole 'nother level, because they are so few and far between. If I spill a gallon of milk, I reach for the mop. I don't waste a minute thinking, 'damn! Why'd I drop the milk!'
I decided to start writing this blog because I spent way too much time with the identity of a sick person. That isn't me. Crohn's is chronic, and their is no cure. I hope I stay in remission, but the fact of the matter is that I will most likely be fighting this disease for the rest of my life, and I don't want to be just some sick person for the rest of my life. I have Crohn's, but it doesn't have me. In this last year, I've matured probably about 10 years worth, and I have a lot of thoughts. Thoughts about things like body image when you suddenly have a huge scar on your belly. When you are losing weight because you can't eat and everyone keeps telling you how good you look. Disability and how difficult it is to access to affordable quality care in this country. Our relationships with food, family, friends. How to find self-worth when everything you thought you were worth has left you. We learn from other's experiences whether we emulate them, or avoid their mistakes, so I hope to be that voice for those who are willing to listen.