Roy's Journey Through The Good, The Bad and The Sh**y (Literally)
Updated: Feb 24, 2018
By Roy | @roysamuelgeorge | February 17, 2018
Hey, everyone. So, imagine yourself with a chronic illness at 14 years old. Puberty hits, girls (or guys) are super hot, and you haven’t grown into your new shoe size or your weird-shaped nose and you STILL HAVE BABY FAT!!!
Welcome to life with Chronic Illness. Chronic illness warriors have learned to remove the questions: “How bad can it get?”, “What else could go wrong?”, and “Can it get any worse?” from our vocabulary. Why, you ask? Because 99.9% of the time it can and often does get worse. Growing up with a Chronic Illness is frustrating and annoying, but also comical in many ways, and it takes a very special person to be able to deal with it. I’m thankful to have grown up with incredible parents and siblings, an incredible support system, and relationships that are equally as supportive and wonderful.
Before you read any further, I want to warn you that you may think some of these stories are gross or annoying and you may hear or read them and ask if they’re real. My responses to those very valid thoughts are:
I’m sorry they’re gross. However, you’re just reading them. Imagine living them.
Trust me, Chronic Illness can be very annoying and intrusive at times. Welcome to my life.
I wish I could make this stuff up. They’d make great sketches on SNL or MADTV.
So, let's travel to one of the first times I remember being embarrassed during my daily quest to be “normal.” I was at school and I had to change my Hickman catheter. Apparently, I didn't change it correctly because the end cap (look up what a Hickman catheter looks like on Google) didn't screw on properly. I was in class and all of a sudden I looked at my multicoloured striped shirt and it was red — the red was blood. The catheter was placed right into my superior vena cava so I could get a blood return and, well, it looked like a crime scene. I went to the school nurse who called my mom and asked what to do. In a typical mom fashion she responded: “Clamp it, have him change his shirt, and send him back to class.”
I feel like everyone was always surprised with how my family handled things regarding medical care. We tried to have a “yes, and” kind of outlook. Sometimes our no fear attitudes appalled doctors but, hey, I was gonna live as normal a life as I possibly could. My mom tells another story about a time we were at a church picnic and I was up a tree. One of the congregation members approached her, and this is the conversation that ensued:
CM: Do you know where Roy is?
Mom: Uh no….I actually don’t.
CM: Oh, well, he’s up in that tree.
Mom: Oh, okay. Thank you.
CM: What are you going to do if he falls?
Mom: Well I guess he may break his arm and probably his ostomy will burst. Can’t do anything about it now. He’s already up there.
CM: *Slowly blinks 3 times* (That part may not be true but it’s good for dramatic effect.)
If that doesn’t tell you even more about the dynamic between my mom and me, I don’t know what will. Growing up, we had to figure out how to make my illness relatable. In an attempt to do so, we tried to find a hands-on experience for other kids to fully understand and have a visual representation of my medical condition. For example, When I was in kindergarten I had a doll with all my illness equipment on it—Hickman catheter and ostomy, and my mom and I brought it into my class for Show and Tell. Not quite sure if that makes me a nerd or makes me weird…
Regardless, it was well received. Using humor, I’ve swerved out of many challenging situations in life. For example, my ostomy burst while I was on my way up to hand in my homework. It was everywhere. When I say everywhere, I mean everywhere. For those of you visual readers, imagine someone projectile vomiting very shortly after having a meal. That was/is my life. So it went everywhere. I was standing in it. My socks and shoe were soiled there was no saving my butt from being made fun or from people talking about this for the rest of my life. A classmate, of course a cute girl, came up to me and pointed and said:
CM: Ewwwww, what is that!?
Me: What’s what!? CM: THAT!! (Now pointing)
Me: Oh, THAT? (pointing at my soaked socks and shoes).......Oh, um, I have no idea.
CM: Oh, well, that’s gross……
Me: *shrugs* Being quick on your feet amidst being stressed and mortified is the key!
Now, let’s talk about life for a second. What does the word “normal” mean to you? Here is the definition according to the Webster’s dictionary: 1 : perpendicular; especially : perpendicular to a tangent (see 1 tangent 3) at a point of tangency 2 a : according with, constituting, or not deviating from a norm, rule, or principle; Ex. The normal way to pluralize a noun is by adding -s. b : conforming to a type, standard, or regular pattern; Ex. Normal working hours. He had a normal childhood.
Normal is such an interesting and loaded word. Everyone’s normal is different. Some people come from families that have two moms, one mom, two dads, one dad. Some come from adopted families, blended families, bonus moms, bonus dads but depending on how you’ve grown up and what your everyday life is like, that can be normal for you. It just so happens that for those with chronic illness such as myself, normal is something different: Having to hook up to an IV for up to 8 hours every night to get the nutrients I needed that I wasn’t getting from the food I was eating; having to change a central line dressing; having an Ostomy and dealing with all the frustrations that come with that. Now, imagine having to go to the restroom more often than the average human being. Let me give you a number. Depending on the day, let’s say 20-30 additional times a day, in the middle of dinner, plays, musicals, movies. It takes meticulous planning go be able to get through certain events without disrupting the flow of an evening. We’re not even going to get into the subject of going on a date and having to rationalize that. HA, oh Lord.
What have I learned?
Throughout all of this, I’ve learned that humor and patience is what is most important. I’ve learned that surrounding yourself with people that listen and love you no matter what is also important. Through the years, I’ve been surrounded by parents and siblings who had a sense of humor and did not allow me to hide. I’ve had a support system of friends who allowed me to always be my true self and not ask a lot of questions or treat me differently. I’ve had a career that is demanding and forces me to rise to the occasion, but allows me the freedom to relax and be still. I’ve been fortunate enough to find, through social media, a community from around the world that is so giving.
That brings me to my next point: social media is God's greatest gift and greatest curse. Social media is an amazing entity that allows you to be your true self at all times. However, social media also creates a wall that you can hide behind. Some people, myself included, become very brave behind social media, posting pictures we wouldn’t normally post or sharing posts that we wouldn’t normally discuss in person. Social media provides us anonymity that allows us to be brave but also to bully others. I’m very thankful for social media and I’ve had the opportunity to meet some of the most amazing people who have become some of my best friends. Just like in life, there are always negatives to things we love so much such as social media.
My encouragement is that you still guard your heart. Guard your heart, guard your mind, and guard your emotions. People can turn on you quickly and can use your vulnerability against you and kick you while you're down. Just be mindful that although social media is incredible it can be awful. I’ve seen people mercilessly bullied and picked on especially in this political climate. My other piece of advice is stay informed.
Stay informed, stay vigilant, and stay aware. The government is continually changing and it's never clear which way is up from down. When it comes to the sensitive subject of our health and wellness, don't allow yourself to be misinformed. Your care is most important. You have control over what your life will turn out to be. You are in control and have the best understanding of your body, and how you feel. You know yourself the best and how far you can be pushed or are willing to push yourself. As you continue in your journey and find your way, please always take time for you. Find the things you're good at. Find hobbies, write, express yourself, share your journey and when you’re ready help others. I would be a liar if I sat here writing this saying I was always this open. Always this willing. Always this vulnerable. It recently has become something I’m very proud of. I surrounded myself with a handful of people that have allowed me to be me. People that love me despite what my body looks like. I am a blessed human being and am certainly here to help you guys if you need to.
Please reach out on social media and ask any and all the questions you may have. I must be very clear, I’m not a doctor and I do not have a medical degree but I can give you my ideas and thoughts but you should ultimately seek your medical professionals and make your own decisions as a team. Thank you for reading. Thank you for laughing.
Thank you for understanding. In closing, I post this article with 2 extremely vulnerable pictures from a photoshoot I did a while back
They’re photos that are quite untouched, unedited and show the scars, a few rolls, some muscles, and most of all, my journey. I’ve never done a photoshoot like this and I’ve never been this vulnerable. So it’s quite a different experience for me. May you be blessed, empowered, and supported in all of your endeavors, Thank you again.
Instagram: @roysamuelgeorge / @sbs_spoonie123
FB: Roy S. George / Adventures of a 20 Something with SBS
Twitter: @Roysamuelgeorge / @spoons4Dayz
Photo Credit David Beloff Photography in Norfolk, Virginia.