“Perseverance. When asked to describe myself, this is the one word that comes to mind. One of my first memories of displaying perseverance was the day I brought home a flyer for a softball league and asked my dad to teach me how to play. From that day forward we practiced for hours. Throwing, catching, running, diving; the techniques I’d need for the proper swing of a bat. Those endless hours of practice helped me acquire skills that would enable me to become a future collegiate athlete. What I didn’t realize was that I learned the first great lesson I’d need at just 8 years old – Keep trying. Never give up.
I was diagnosed almost 5 years ago with Ulcerative Colitis. It took almost 4 months to get a diagnosis. At that point I was so sick I remember feeling somewhat of a relief that I finally knew what was wrong. I didn’t know anyone who had the disease and in my head I thought I would be able to manage it with a pill and then I’d go back to living a normal life again. UC is a disease that causes your body to think that your intestines and food are the enemy. It causes inflammation, diarrhea, abdominal pain, weight loss, and constant fatigue to name a few. When people ask me what it feels like I tell them think about their worst bowel movement and multiply it by 1000. Being a very active person with a love for sports and the outdoors, this would eventually knock me down physically and mentally.
Through the years I tried everything. And just like the perseverance I found in my 8-year-old self many years ago, I wouldn’t give up. At one point I was taking close to 30 pills a day. Each flare up and hospital stay caused me to swell with weight from the medication. The medication caused insomnia and mood swings. 10 days in the hospital last year caused me to gain close to 30lbs in water weight. I was too swollen to even walk. Withdrawal from the high doses of steroids would leave my bed sheets soaked from sweat. Months would pass until I resumed my normal weight. Unfortunately, it was nothing but a vicious cycle. My body would eventually reject the new medication I’d be given, and I’d become even sicker.
My sister being a nurse, knew how serious the disease was and she was great in communicating to our family what was going on. Coming from a close knit family, I have never gone through this journey alone. Whether it be in the hospital, at home, or when it comes time for a doctor appointment, they have never left my side. My friends understood how debilitating the disease was as they have been there at my best and when I was at my worst. They understood if I wouldn’t be able to go out and had to cancel plans last minute. I think I was one of the lucky ones and that a lot of people unfortunately struggle with support and acceptance from the people in their lives.
Eventually we were able to put my body in remission. Things were going well until December 2017 when my perfectly healthy mother was suddenly diagnosed with stage 4 pancreatic cancer. Knowing I’d be losing my mother was all it took for my health to deteriorate. During the next 9 months I watched my mother lose her battle as I tried to control my own. I can’t even begin to describe what it felt like on the days I was too sick to take care of her. Or when we spent our last mother’s day together in my hospital room. It was right around the time that we found out my mother’s chemo treatments were no longer working in slowing down the cancer that I’d be admitted into the hospital. We spent mother’s day in my hospital room while feelings of grief and sadness just clouded my mind. We all put on our best faces and tried to make it as normal as possible. My mother and I never spoke about the feelings of that particular day but we both knew it would be the last mother’s day we’d spend together. Death was a touchy subject. My mother was my best friend and I couldn’t accept she would be gone soon. I refused to discuss it with her until one day she said to me ‘You can ask me anything you want.’ That was all it took. I created a small notebook with questions I’d have her answer and the rule was I wouldn’t open it until the time was right. When I needed it most. Once she was no longer here. As the summer winded down and she got sicker, I remember taking her home from the doctors one day and sitting on my parents couch crying. I kept repeating that I didn’t want her to leave. It was selfish at the time. I knew how bad she was suffering and how hard she fought. It was at that moment while she hugged me and looked me in the eyes when my heart and fears would finally be at ease. She reassured me she wasn’t scared of death because she lived a life where she had no regrets. She made me promise her that I would go on living my life. That I wouldn’t give up no matter how sad I felt or how tough life got without her here. So that one day when it was my time to go, I too would have no regrets. The painful conversation I’d share with her that August afternoon taught me my second greatest lesson – What it meant to fight and continue living. Through it all my mother displayed strength and tenacity until her very last breath. She passed away 6 days before my birthday. Although she is no longer here her fearless nature would forever be instilled in me.
Fast forward 4 months later to January 2019 as I watch my doctor review the endless list of medications we have tried and the disheartened look on his face. He struggles for the right words to say as we both know we are out of options and that’s when I blurt out ‘I want the surgery.’ I’ll never forget the bewildered look on his face. What kind of patient asks for a major life changing surgery? I kept replaying the conversation my mother and I had about living life to the fullest. I thought about the notebook we created together. I would read one of her answers to my questions every so often, usually in times of need. One of the things she wrote to me was that she wanted me to visit Italy one day. She wanted me to explore the country she was born in and she told me that the trips she finally took in recent years were some of the happiest moments of her life. I reflected on that answer for awhile. I thought about my current health state and how I was so close to being hospitalized again. Surgery was my only option for getting a second chance at life. I smiled at the doctor when he agreed that surgery would be our next step and it was in that moment that I realized I had the same strength and fearless nature that my mother had during her fight.
So here we are. It has been 5 weeks since I had my first of three surgeries. For the next 9 months I will have an ileostomy bag which means I excrete waste outside of my body into a changeable bag. Since my entire large intestine and colon was removed, my surgeon will be reconstructing a pouch where my rectum once was. After my final surgery, I will be able to excrete waste like a normal person. I appreciate life more than ever now because I was given a second chance at living.
Ulcerative Colitis is an invisible disease. Unless I picked up my shirt to show you my bag, you wouldn’t see anything different about me and that is what makes this hard. Before getting my bag, it was even more difficult. Since you couldn’t see what was wrong with me, people would often think I was using my condition to get out of obligations or as an excuse in everyday life. What the rest of the world didn’t see was the countless times I had an accident and couldn’t make it to my bathroom which was only a few feet away. They weren’t there when my family would accompany me into the bathroom so I could hold onto them because the pain of having a bowel movement was too much to bear. The world wasn’t there when I was too sick to get off the couch for days at a time. Or the countless events I missed because it was easier to stay home instead of worrying about where the closest bathroom was. And they surely weren’t inspecting my stool on video calls with my sister trying to determine if this would require a trip to the hospital.
Inspiration. This is the word that is commonly used to describe me today. But for every piece of admiration I receive, I replicate the same response; It is only when you recognize you have overcome adversity that you discover the strength which lies within us all.
There are currently 5 million people worldwide who suffer from this disease. In the United States, I’m one of the 1.6%. This disease is a debilitating condition. But instead of letting it consume me with negativity and discouragement, I welcome it. I look at my bag not out of disgust but with love. It literally saved my life. I chose to tell my story for a number of reasons but I mainly hope to be able to inspire at least one person who is on the verge of giving up and to show the world that even during the worst storms, the rainbow will one day emerge.Throughout the last few months I have found hundreds of people in the online community who have welcomed me into this new world with open arms. We share our journeys and choose to fight this battle together. Instead of living with embarrassment or shame they have made me feel no different than the next. It is because of them that I built up the confidence to share my story with the world. I decided to tell my story for a number of reasons. I mainly hope to be able to inspire at least one person who feels that their world has fallen apart and are on the verge of giving up. I want them to see how important it is to continue to fight. More than anything I want them to see that even during the worst of storms the rainbow will one day emerge and it will be okay. Today I often hear that I’m an inspiration. But for every piece of admiration, I replicate the same response; It is only when you recognize you have overcome adversity that you discover the strength which lies within us all.”
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