The Language of Chronic Illness
By: Roy George
Companion Magazine Contributor
Spoonie Instagram: @sbs_spoonie123
Pity, Empathy, Sympathy, Sorry, Warrior, Suffering, Sadness, Fear, and Death. These are just some of the words that are often associated with having a chronic illness or a high tech medical illness. Hey, my name is Roy George and I’m here to tell my story about surviving and thriving with a medical illness. Now, let’s back up for a second. My medical illness is called Short Bowel Syndrome or Hirschsprung's Disease. What that means is that the organs I was born with, such as small intestines and large intestines, didn't fully develop the muscles necessary to “achieve daily activities”. Thus, resulting in an ostomy. With that, the absorption of things orally was hard to come by. In order to maintain all the fluids and nutrients needed for my daily life, I had to have a Hickman Catheter placed in my Superior Vena Cava.
Growing up, I was blessed to attend a private Christian school in upstate New York. Our graduating class was a class of 26 (Yup, that’s right. 26 people….yikes). Having so few people in that class, my best friends were my friends since kindergarten. Fun fact: one of my oldest friends is expecting her first baby boy. We’ve been friends for 24 years!! My friends really took care of me and treated me just like everyone else. Even though I had this medical diagnosis, I had to attend regular classes just like everyone else and had to make sure my homework was handed in on time and done correctly. There were no exceptions to this rule. As someone who grew up with a single mom and an older brother, I was never allowed to use my condition as a crutch or a cop out. If I had a day where I was absent from school or was in the hospital because of surgeries, infections, or other issues, I had my homework, tests, and quizzes sent to me and completed in the hospital.
Over the course of my 20+ years living with short bowel syndrome or SBS, I've had countless hospital visits, catheter infections, catheter pulls, visits to interventional radiology to have new lines placed, PICC lines, resection surgeries, repair surgeries and diagnostic tests. However, with all of that, I still played basketball (not well), baseball (even worse), soccer (loved the most) and ran track (set a record at one point). My first love, however, was music. At 4 years old, I crawled up onto the bench of the family piano and started playing by ear. The rest was…...as they say, history. I began devoting my life to the piano and singing harmony for as long as I can remember. I started doing theatre at the age of 9, when I was Rabbit in a Winnie The Pooh show and then continued to do theatre for years and years. At 13 years old, I interned at a theatre company and started helping out with their music classes. At 16 years old I was hired. I have been music directing shows at the high school, middle school, college, regional and community theatre level since then. I also travel to and from NYC as a pianist and singer for cabarets.
Life sounds pretty fantastic now, that’s for sure. However, growing up with a chronic illness wasn’t always a bed of roses and currently still isn’t a bed of roses. At 25 years old, I lost all access sites after a terrible infection. The result was having a catheter put into my liver. It certainly wasn’t ideal but was our last resort. It was that or having it put in on my back and I’d have to have a nurse come and do daily changes for me and be incapable of caring for myself at times…..no thanks, I’ll pass. That was an insanely hard day when I found out that I no longer had any access to my chest. We then decided to look into a drug that was very new to the market and see if it would be beneficial to try out. To say the drug that we used worked would be a gross understatement.
Because of personal reasons, I’ve decided to leave out any information including the title of this drug. I want to respect the people who distribute it and I want to keep it anonymous. The drug is fantastic and works for me. As usual, as is for every drug, it has different effects on everyone and results may vary from person to person. So please look into the options but know that everyone’s story and everyone’s situation is different. As I said, my life hasn’t always been easy but I’ve also never let me sickness run my life. Has it been inconvenient at times? ABSOLUTELY. Has it had some unfortunate and frustrating outcomes sometimes? Absolutely!
I have been blessed with a God who spared my life at every turn and every step of the way-trust me there were a couple close calls. I have two parents who love me unconditionally no matter how inconvenient SBS is. I have siblings and nieces and nephews that, despite not understanding the severity or extent of my medical condition, love me, appreciate me and take care of me (I’m the youngest and a bit spoiled, haha) no matter what, and are always there to pray and check in on me when sick or, of course, just because. I have and have had relationships both platonic and romantic with people who continue to keep me positive in this journey, support me and love me despite my body image issues and continually being self-conscious of how I look.
When asked to write this article, I often wondered what to write. I wondered who would care to read this and I often wondered what exactly people are looking to hear and read these things. I’ve decided to write this from the heart with honesty and as much grace as I could. Although it sounds like I’ve had a pretty cushy life in comparison to others, I have had my days where I’ve wanted to not be alive. I’ve had days where I didn’t want to get out of bed. I’ve had days where I’m in so much pain but still have to “life”. I’ve had days where I cry and wonder why me. I have blamed God, I have blamed biological parents, I have had raw and unfiltered aggression and frustration of not being “normal”. It’s all happened. It’s all been difficult. However, with the parents and support system I have and the faith I possess, it truly has been a beautiful learning experience. Although life has thrown me curve balls, I’ve learned to use humor, music, and prayer to get through life in a healthy manner.
My advice to those struggling, those thriving, those in the in-between, does it get better for you in terms of medical technology? Not necessarily. Unfortunately, we have to keep bringing a voice to our illness and keep thriving and striving to educate and bring a message of positivity and knowledge to our illness. The word ‘patient’ to ME personally means that we’re incapable of making decisions for ourselves or are uninformed. In reality, our health and our well-being is in our hands. We owe it to ourselves to continue to tell others and to be very firm with explaining how we feel, what we feel our bodies are capable of tolerating, and how much of something we’re able to tolerate.
I want to extend my sincere gratitude for the creators of this website for allowing me a platform to share my story, give advice, and shine some positivity on a rather poopy situation (humor and pun intended). I want to thank you, the reader, for taking a second to read this. I want to thank those that have come before me and unfortunately didn't make it through their brave and incredible battles. Those individuals have taught me how to fight. They have taught me how to advocate. They have taught me how to be positive and they have taught me how to shed light on a situation that even Hollywood doesn’t want to speak about…..I mean, let’s be honest, can you see Meryl Streep talking about her bowel movements? It would be an incredible voice if she did but alas, that's our job. Hopefully, I’ll win an Oscar, Tony, Grammy, or People’s Choice award one of these days!
In closing, I hope that you find positivity in the worst moments. I hope you find comfort knowing that someone is also going through a variation of what you go through. I hope that you use the power of social media to reach out to others fighting the same battles and struggling through the same fight as you. I hope you will reach out to me when things aren’t as good as you hoped they’d be. Please allow yourself the frustration and anger you deserve. This disease is life-altering and frustrating. The best advice I was given was to make sure I wasn't letting this disease run my life, and you shouldn't either. You have the illness. The illness does NOT have to have you!
May 2018 bring you peace, positivity, and perspective. May 2018 be the year of change, challenges and courage. May 2018 show you grace, gratitude, and bigger guts than you have inside your body. Challenge yourself to do things outside of your comfort zone and try not to accept ‘no’ as your final answer. Think less about “no” and more about “how can I make this work in part or whole?” Be blessed everyone. Thank you again.
December 11, 2017