There I was, taking my final bow…after ten years of medical hurdles. I had done it. I actually wrote a one-woman musical about how I literally lost my stomach (when it ruptured in the operating room) and gained a story – appropriately titled, “Gutless and Grateful.”
It was a big deal to finally compile all of the journaling I had done for six years unable to eat or drink into a kind of “script” of my life. This was a big full-circle moment, complete with song, dance and dialogue. After nearly losing my life at 18 years old, I was now singing and dancing about it, and hopefully inspiring others. This was going to be the new beginning of things to come.
I have a segment in my solo show where I explain how obsessed I became with food when I was unable to eat – so obsessed that I even started to cook. You become fixated on what you don’t have. So even though I had regained medical stability, stamina, and spirit, I still had one thing: an ostomy I wanted to reverse, and a fistula – which is an opening after surgery in your body which really should have stayed closed – that refused to heal. I had the option of getting an elective surgery done to reverse my ostomy bag and even heal the fistula in the process.
Caption: After my show, on top of the world
So, I made the decision to get this elective surgery, with the full support of friends and family behind me. After all, if I didn’t at least try to make things surgically better, I would go the rest of my life wondering “what if.” Right?
So I got my 27th surgery four days after I premiered my show in New York. Three extra surgeries, a few catheters, and two months at Mt Sinai later, I woke up with more problems that I came in with.
I was overwhelmed, waking up in the hospital, and once again faced with with brand new medical team, trying to adjust to not only my lengthy medical history, but who I was. They couldn’t possibly understand that I was a person, not a actual patient. Could they even fathom that I had starred in a musical about my life just noe week before this? My medical history was so jaw dropping that doctors usually assumed the hospital “was” my life. They couldn’t even comprehend that not only was i able to do “normal, functional ” things, but also extraordinary acts in spite of my circumstances. My one-woman show was a triumph of the human spirit – my great comeback. Now all of that work seemed to be erased in a heartbeat, as though everything I had accomplished was really just a dream I was waking up from….
Caption: Stuck in the hospital, again not eating or drinking and obsessed with food
I ended up staying in that hospital for almost three months, once again unable to eat or drink indefinitely. The surgery was a complete fail on all accounts, spiraling into three emergency surgeries within the first 8 days. The surgeon kept saying that a few more stitches or quick interventions could fix things efficiently, but he kept cutting out more and more intestines, to the point where I believe my father actually asked him to stop trying to re-operate. . In the hospital stay I lost 30 pounds and an immeasurable amount of spirit. As I struggled to endure day after day while upkeeping my emotional wounds, I now had a massive, gaping wound in the middle of my stomach that scared me to look at, let alone think about. I tried to forget what the whispers I heard around me – the concerns, and worse, the acceptance that there was no answer to healing or improving the damage that my first elective surgery had caused.
Caption: A vision board I painted before surgery, hoping to reverse my ostomy bag and get my life back.
After surgery, I still had an ostomy bag – and many people have ostomies. I was disappointed that the big attempt to reverse this bag on me was a total failure. I felt sorry for myself, lamenting the fact that I’d never have the feeling of running my hands down a smooth stomach again. When I couldn’t take self-loathing anymore, I decided to make friends with it. I reached out. I inquired about support groups in my area and realized there are many people like me. I realized my ostomy is a beautiful thing and has enabled me to do all the things I’ve been able to accomplish over the years. It is my uniqueness.
Now, not only did I have an ileostomy, I had a massive, open, gaping wound that was now developing into an intricate network of fistulas. Even worse, in the third attempt at surgery, the surgeon had nicked my bladder in the process. I came out of surgery with another fistula in my bladder, and was told I’d have to have a catheter in for “at least several months.”
It suffices to say that this was not what I expected after a surgery I thought would fix everything. I had spent enough time feeling different from everyone else, and now I had more physical “differences” than I could handle. When I was discharged from that hospital stay, months later, believe it or not, my parents took me to the mall. It was their attempt at making me feel “normal” after such a crazy-making hospital stay. But with a wound that was highly out of control, I ended up barely making it through one store before this my wound started to leak. Upset, frustrated and overwhelmed, I ran to the bathroom and stuffed dozens of paper towels into my tee-shirt, trying to stay dry for as long as I could. Once I got home, I managed to get from day to day as a 25 year old wearing layers of diapers, packed to the brim with hand towels.
This clearly was not a livable life. I had to accept that this wound was not going to heal. Wound or not, I needed to live my life. Now it was up to me to figure out how exactly to make this work. I’ve never been one to be happy with limitations, and I’ve never been one to settle. I decided to do something about it.
I remember having a breakdown one afternoon as I kept trying to leave my house for a walk. Every time I opened the door, My pants would become drenched as my wound let out another unexpected burst. This felt like such maniacal torture that I even started laughing. Was this how it was going to be for the rest of my life? Confined to my house, buried alive in paper towels to soak up a stubborn, leaking wound? Would I ever be able to even have people in my life again, or do anything normal?
I had to figure out how to manage this unwieldy opening in my torso. I knew there were ways. Now I just had to face what I had tried to not think about at this point: this wound was a permanent staple in my life. Now I needed a permanent solution.
Caption: Performing my show at Boston College…with a few bags.
One of the hardest things I’ve ever had to do was decide that I needed to put a bag over this wound. That meant acknowledgement that I would never get my smooth, “normal” stomach back. It meant facing that I had made the decision to get this 27th surgery, and it had failed on all accounts. But facing this perhaps gave the future a glimmer of promise.
Saying “I’ll put a bag on my wound” is one thing. But imagine trying to seal an air-tight, leak-proof bag over imperfect ridges and gaps of scarred skin. It took dozens of bags, ideas, creative brainstorming, googling, nurse-consulting, and literal cutting and pasting. I had to rely on my skills as an artist – which was a hobby I had actually picked up in hospitals – to snip, glue, rearrange and create some kind of apparatus that could possibly hold my insides…inside of me.
Caption: Me in my studio
What complicated things more, is that this surgery had taken out even more intestines. Now, I only absorbed about 20% of what I ate…and that 80% came right out of my wound. This was going to have to be a heavy-duty bag.
Creating the perfect combination of a bag and adhesive, cut to the perfect shape was more work that an artist does preparing for an art show. It was tiring, frustrating, discouraging work, as each bag seemed to leak or fail in a certain area. Would I ever be able to leave the house again, or should I just lie teh rest of my life in a bathtub? I was a leaking, sorry mess.
What did that leave me with?
Almost five years later, I still have an open wound that has never healed, and as I’ve been told, it probably won’t, unless I do some kind of medical intervention – possibly even a transplant. And eventually, I did find a bag that consistently stayed on me, leak-free. I do happen to eat like a race-horse, and with 80% of 8,000 calories coming out of a bag on my stomach every day, having a “leak-free” day is a rarity.
Now, y wound-bag makes like functional, but not the easiest. I’ve learned to make adjustments, but that doesn’t mean I don’t get frustrated. First of all, I don’t sit. (You heard that right.) I lie down when I sleep, but I’ve trained myself so well to stand at this point, that it takes more energy to sit down than it does to stand up. Because of where I have to place the bag on my wound, if I sit down, it starts leaking…which is not great after I’ve just eaten a huge chicken dinner. So everything I do…I do standing. That requires some innovativeness: I’ve made a standing desk out of jut about anything you can think of! And I certainly don’t drink, but I’ll eat dinner at the bar any chance I get.
Caption: Making a standing desk out of my suitcase on the train, eating my cheese
Another “adjustment is realizing that basically all of what I eat will come right out of a bag. It’s an awareness I’ll never get used to. It means that going more than a few steps away from a bathroom might mean my bag will fill up, I’ll be leaking out of my stomach, drench my clothes, and have to find somewhere to change it. I’ve often felt that “little kid shame” when I mention I have to use the bathroom, and a friend will respond, “Didn’t you just go?” Yes, I did just go. And then I drank enough water to fill up a bag on my stomach…
As a naturally active person, the hardest adjustment is that once I have the bag sealed, any twisting, turning or bending down will cause the bag to leak. I used to love doing yoga every morning at a local studio, until I was finally asked to leave because patrons were bothered by me “leaking intestinal fluid all over my shirt.” I agree that it wasn’t the best feeling to be dong a handstand and have a stream of bile run down your neck, but I was deeply hurt. I remember running home from the studio, crying while calling my mother, shouting I never wanted to be seen in public again. I was embarrassed, ashamed, and angry at this bag on my stomach that threatened to make me a permanent outcast in the outside world.
So now, I love being active, but I can only do any kind of bending, or twisting as soon as I get up, before I shower. Once that bag is on, I basically have to carry myself around like a vertical stick all day. This can feel really frustrating at time when all I’d love to not think about what I do, recklessly jump into a kick-boxing class, or simply get on my knees to grab an item on the bottom shelf at the grocery store. I sometimes feel humiliated – or like I’m 90 years old – when I have to ask someone if they would “kindly pick up that pen I dropped.” With my wound-bag, not only can I not reach down tot he floor, I really can’t bend over at the lightest angle before my bag starts to leak. I’ll slightly tilt to open a drawer, thinking that my movements are as subtle as they come, and suddenly I’l feel a dripping down my legs. And there goes another wound bag…
So, you might be wondering, big deal – just change the wound bag, right?
You’re right, that’s what I eventually have to do, whether I like it or not. But putting a new bag on is a science project in itself. Let’s just say it requires three different medical powders, cement, glue, four different kinds of adhesive sponges, stickers and waterproof tape, scissors, wax, and…a hairdryer to melt the wax. This “art project” takes a good 40 minutes to complete every time. And since my bag can leak anywhere, any time, when I least expect it, it means I have to carry around an “emergency bag” with me at all times. This purse is a bag that my father has helped me put together including all of these supplies, plus a few diapers, hand towels, and a change of clothes. It’s a shlep to carry with me wherever I go, but the tricky part is – until someone invents a battery operated one – finding an outlet to plug in the hairdryer. Imagine having a day out in New York, suddenly needed to fix a leaking bag, going from store to store asking not only if you can use their bathroom (good luck in the city!) but if they have an outlet you can use as well. If you are imagining many people looking at you with blank stares, thinking you’re crazy, you’re absolutely right. No one really can fathom why you would barge int a restaurant in tears asking to use a bathroom with an outlet for a hairdryer.
At those times, I go to Plan B – putting on some diapers, stuffing some towels into them, and praying that this new “outfit” can last me until I get home.
It doesn’t seem like a very fun existence – and sometimes it’s not. I have to admit that there are times I just don’t want to put up with it anymore. But then I think about what I love doing in life – being with friends, performing, living in this world, getting to travel, feeling connected and a part of the moving, flowing real world – something that I longed for or years coming out of my coma. And I wouldn’t give that up for the world.
Yes, I do need to make some adjustments to live in the real world. You could even call some of those adjustments “limitations.” I believe that you don’t need to find the “meaning” from every hardship in life, but you do need to find ways to work with that hardship so it doesn’t run your life. I do find that getting out there, into the world and finding ways to live what you love, ultimately s worth it – at all costs.
And having this open wound certainly makes life an adventure. Let’s just say I’ve become very skilled with a hair dryer, I could beat you in a “standing” contest any day, and I’m the first person you’ll want to ask for innovative solutions. And sometimes, when you work harder for things, you even appreciate it a bit more. Because this bag i in the middle of my stomach, I’m physically unable to wear pants. I’ve only worn dresses for five years. But I gotta say, I can rock a little black dress with my neon colored Asics and thigh-high socks better than anyone.
At the end of the day, I have a few extra bags on me, but now, after far too many years without a working digestive system – do have a digestive system, even it it’s got its quirks. And I can eat now.
Caption: Rockin’ my “standing desk” before I gave my TEDx Talk
So next time you see me, I’m happy to grab lunch, and chat about life with an open wound – because I also happen to be an open book.
Just don’t expect me to sit down.