The secret to happiness : Life as a chronically ill teenager | Tammie Ong | TEDxNTU

[0:17]You may never get better. I was 17 when I heard those words. Hi everyone. My name is Tammy Ong and I'm 19 years old this year. I know you're probably wondering, what is this tube on my face? Well, let me tell you my story. In 2021, I went to bed one night and the next day I fell sick. And since then, I never got better. I was diagnosed with multiple rare chronic illnesses and they are debilitating. These conditions directly impact my nervous system, affecting crucial factors such as heart rate and blood pressure. The most significant impact, however, lies in my digestive system, which unfortunately doesn't function as it should, which means I can't eat. I live on something called total parental nutrition, TPN for short. Basically IV nutrition that is given through a central line into your heart. In contrast to a typical after school routine of most teenagers, my daily routine takes a unique path. While others might enjoy a delightful dinner with their family or head out with their friends for meal after school, my situation is a little bit different. One of my treatment requires TPN to run for over 12 hours, which means that staying out late isn't feasible for me. Instead, my regiment involves coming home, taking a shower, and patiently waiting for the numbing cream to take effect on my central line. Once it takes effect, I will carefully access it with a needle and connect my TPN. For the next 12 hours, I'll be connected to the pole, pulling it wherever I go, into the room, into the toilet, everywhere. Can you imagine how demanding it is? I mean, even now I'm still running. I sometimes feel like a dog on a leash. Literally. These illnesses hurt. They are painful. It may not look like it, but as I'm standing here today, my joints hurt. And my heart is racing. But I'm filled with so much gratitude and emotions as I get to stand here today to share my story. Last year, due to my health, I had to take a gap year from school. I was constantly in and out of the hospitals as doctors tried to figure out what was wrong with me. Despite the struggle, I never gave up. Instead, I pushed myself to see this journey in a more positive light. As I went through some of the darkest moments of my life, I felt this burning passion in me to want to give to the world, that I had so much to offer. Today, I'll be sharing with you what I learned throughout this ongoing journey and why life is worth living, despite your struggles. It is during our most challenging moments that we come to truly appreciate our families' unwavering support. Even before becoming sick, I've always held my family as the top priority. However, this journey I went through served as a powerful reminder that they're always there for you, through thick and thin. In October of last year, I experienced pancreatitis. If you do not know, pancreatitis ranks among the top 20 most excruciating painful conditions known to mankind. The pain was so intense that walking became a challenge and tears were constant companion. To manage it, I had to undergo IV steroid treatment, which brought its own set of traveling side effects, ranging from chest pain to difficulty in breathing. It was a trying and exhausting time and I felt like life itself was slowly slipping away. Yet, amidst the fear and uncertainty, it was during those moments where I truly understood the immense value of family. My parents especially. They visited the hospital every single day and selflessly assisted me with supposedly simple daily tasks like showering or changing clothes. They took care of me as if I was a newborn once again and not once did they complain. I'm equally as grateful to my siblings as well, who made my hospital stays so much brighter with their cheerful presence and entertaining company. Despite their busy schedules, they always found time to visit me and never failed to put a smile on my face. Just watching movies together or having heartfelt conversations brought me so much joy. Their love and support have been a constant source of comfort. They are the reason I live my life and for that I'm eternally grateful. On this journey, you come to realize who your true friends are. Yes, I did lose some friends. But what I gained were even better ones, the ones who are with me today. Friends are like family and their support has meant the world to me. I remember when it all began and school became a real struggle. I had to miss a whole term and keeping up with subjects was tough. But my friends were absolute superheroes and never let me feel disconnected. They kept me updated and even put me on Zoom so that I could listen in and participate in class. I felt like I was in the classroom with them. Many of them came to visit me in the hospital and being confined in hospital, dealing with the constant pain and nausea can be incredibly exhausting and overwhelming. But when my friends visited, it was like a breath of fresh air. They always say that every cloud has a silver lining. During one of my long-term stays in the hospitals, I made a wonderful new friend. She was one of the nurses on the walk who would go above and beyond for me. She became more of a friend rather than just a nurse. We even took on creative projects together like punch needling, as shown in the video and even danced together. I'm very thankful to have met such wonderful friends along this journey. Despite the uncertainties of my journey, I made the heartfelt decision to share my story on social media, showcasing both the highs and lows, with the hope of inspiring others facing illnesses. I wanted to convey the message that even with health challenges, life can still be lived to the fullest and one can pursue the things that they enjoy. I've come to see my illness as a bit of an unexpected blessing. As my journey started gaining attention, the impact I had on people's lives warmed my heart. Reading comments like, your illness does not define you, filled my passion to contribute positively to the world. Through this experience, I created a nurturing community where I could be my authentic self, free from any shame or hiding due to my medical devices or health challenges. I realized that an illness does not define who I am as a person. It is common for others to express pity when someone's unwell. But I believe that we, as individuals, facing health challenges, have an incredible potential to contribute meaningfully to the world and even make a lasting impact on people's lives. My ultimate hope is that I'll live my illness and defy all odds. Though the path ahead is uncertain and my condition is progressive, there is not going to hold me back from living my life. Why wait for good health to start living life? I'm thankful to be alive and breathing, not bedridden. Even though I spend a lot of time in the hospital, I still got a life to lead. And with the support and comfort of our friends, family and community, I'm determined to keep sharing my journey, spreading positivity and encouraging others to see the beauties and possibilities that life has to offer. Spending a lot of time in hospital makes you realize a lot of things. You see that many other people are facing tough times with various illnesses or challenges. I remember one of my first days in the hospital in the pediatric oncology ward. I met many different kinds of patients there and especially kids. It was really difficult to watch them in pain, having to go through treatments or take their medications. But what struck me was that even in the midst of all that, they were still able to stay strong and be happy. Inspired by the strength of those children, I felt compelled to do something for them too. I came up with the idea of a bright bin, a collection of stickers, snacks, and drinks. I placed it at the nurses station, making it accessible for anyone who needed a pick me up. You may not realize it, but these small gestures have the power to brighten someone's days in unexpected ways. Furthermore, through my own experience, I've come to realize that chronic illness come with a heavy financial burden. I was fortunate enough to have adequate insurance cover, but I realized that many others are facing struggles on their journey. It was this realization that propelled me to initiate fundraisers for other young people bearing illnesses. Starting with Make a Wish, I've always admired their work with kids. I felt the magic of life changing wishes. I then expanded my efforts to Club Rainbow and Red Disorder Society of Singapore. All together, these fundraisers raised about 23,000 and I'm deeply grateful to all who have supported them. Even in the midst of my own health challenges, I'm always looking for ways to brighten others' days. I genuinely believe in the ripple effect of small kindnesses. Just like everyone else, I have my challenging days. Those days where the pain becomes so intense that getting out of bed feels like a monumental task and simply waking up on its own is exhausting. I'm here to tell you that it's absolutely okay not to feel okay sometimes. Feeling down or lacking motivation is a normal part of life. And yes, being a teenager with a feeling internal nose doesn't help it, right? I mean it's pretty hard to miss like a noodles sticking out of your nose. Adapting to this test to go out, but I come to realize that these are natural human reactions and people are naturally curious. However, I hope that people can approach us with more respect and treat us as it would with any other person. Typically, when visitors come to the hospital, there's often a cloud of sadness that hangs in the room. People can feel unsure about what to say or how to react, creating a sense of awkwardness. But meanwhile, my heart was filled with gratitude and happiness. This wasn't because I was happy about being sick, but because I saw the silver lining in having a break from school and being surrounded by the people I cherish. I've come to see my illness as a bit of an unexpected blessing. During this journey, I even went ahead to decorate my hospital room, me to create a sense of home. With uncertainties about when I could leave, I made the best of my situation. Playing Nintendo Switch with my parents, having heartfelt conversations with my friends became my sources of rejuvenation. Now, I've come to see my illness as a bit of an unexpected blessing. It's given me a chance to share my journey and hopefully inspire others to live their lives to the fullest. If there's one thing you could take home from this talk today, is this. Live your life as if there's no tomorrow. Because the truth is, tomorrow isn't guaranteed. Embrace the challenges that come your way and continue to live your life fully despite any obstacles. Imagine this. Imagine life as a canvas waiting for the bold strokes of your unique story. Every step you take, every experience you have, contributes to the masterpiece you are creating. So let's just not only be thankful for the small joys. Let's infuse everyday with a spirit of boundless passion. Embrace life's intricate tapestry and journey forward with the purpose of living life to its absolute fullest. Thank you.