Don't Romanticize The Fact That I'm Dying

The latest buzz on the internet is a new television show called The Red Band Society. I've read a few reviews of the show that were written by chronically or terminally ill teens who had watched the pilot. Their reviews made me worried that chronic or terminally illnesses wouldn't be portrayed properly. And while there were a few things that I disliked about how they portrayed life in the hospital - they did have some wonderful teaching moments and this show will hopefully raise awareness about children with terminal or chronic  illnesses.
Let me start off with the positives. As someone who has been evaluated for a heart-lung transplant, I was pleased to see that they explained how difficult it is to get a heart transplant, and they talked about the fact that because the patient was on drugs would move her even further down the list. In the weeks coming, I hope they show all the tests and medications this patient will have to be on - and even possibly on an artificial heart while waiting for the transplant. 

The message Leo gave as he handed out the Red Bands, that you are not alone was something that hit very close to home to me. When you are in the hospital, you do get to meet other patients and can bond with them. If you're lucky, there is a camp out there for you to go to and meet other kids like you. Before I went to heart camp, I felt so alone in my health situation but meeting other kids, talking with them and getting strength from each other has helped me more than I could ever explain.

I loved the jokes that the kids would make about their own health. Emma's comments to Jordi about his leg and all the things he needed to do before he got it off - it made me laugh and smile. I joke a lot about my illness to my friends, the healthy and non-healthy ones! Between us CHD kids, we make heart condition jokes all the time with one another. It helps us to deal with something so serious by being able to laugh at it. Gives our health just a little less control over us whenever we can laugh it off. 

With that being said, there were a few parts of this show that I did not agree with. For one, Dash who has Cystic Fibrosis is need of a lung transplant but he isn't even on oxygen! If you are at the point of needing a lung transplant so badly that you are hospitalized, you should be on oxygen 24/7 and possibly even pushed around in a wheelchair because even walking gets you exhausted. Emma who is anorexic who is not getting proper nutrients and could easily dehydrate doesn't have a feeding tube or even an IV to help give her supplements. 

I've been in and out of the hospital since I was born and I have met a lot of other patients while in there and I can guarantee you that none of my friends nor myself have ever worn stylish clothing like these kids did. You are so emotionally and physically exhausted that you have no energy to put on make up, let alone plan out stylish outfits. Pajamas and hospital gowns are not only the most comfortable to wear when you're sick, they are the most practical for IV, drainage tubes, port, etc. access. And why do all of these kids look so full of energy? Pale cheeks, droopy eyes and a slow zombie-like walking pace is what real patients look like. We are not constantly running around throwing parties and sneaking in beer. In fact - that has never happened for me or any of my other chronically ill friends. 

There are two messages that this show gives that I strongly disagree with. The first one is the message that there is freedom in a hospital. That is 100% false. There is absolutely no freedom when you are a patient in the hospital. You are told what you're going to eat and when you're going to eat it.  Heck, you can't even go to the bathroom without your nurse coming in to measure just how much you went! You are woken up ever 4-6 hours during the night for vital signs, whether you want to or not. Because you are a minor, you have no say in what procedures you have. The doctor says surgery, you get one. The doctor orders a blood draw and a MRI, you do it. When you want to take a shower, you have to make sure a nurse or a parent is in the room to help you with something that you used to be able to do all on your own. You don't even have control over your own body and health. 

The second message is that life doesn't stop when you go into the hospital, it's just beginning. That I disagree with completely. Life stops. Your life stops. Sure friends come to visit you, but once they leave - you're left alone in an empty hospital bed while they get to go out and enjoy the world around them. You miss Holidays, birthday parties, school field trips and all the memories that would've come with getting to experience those things. You sit day in, day out, waiting to get better and hoping that someone from the "outside world" will come in to visit you and bring just a little taste of life to you. You scroll through Facebook, seeing all of your friends travel over the summer. You see photos of your cousins going to that concert you had planned to go to together. You read status updates about how amazing Homecoming was this year. And you missed all of it. When you finally get out of the hospital, you have so much to catch up on. Friends have moved in different directions and you've missed out on so much that it's almost next to impossible to get caught up. You're playing catch up from the moment you get out and no matter how hard you try - you can never get those weeks or months back nor can you ever share those memories with them because you weren't there. So no, life doesn't start when you go into a hospital. It screeches to a halt. Your life before you got into the hospital is on hold for you and you are missing out on so many things while you're cooped up inside, just trying to stay alive. 

I'm excited for this show because I do believe it can raise awareness about kids who are chronically and/or terminally ill. With that being said though, I really hope that if this show continues they interview and spend time with real life patients who have had transplants, had chemo, had eating disorders and have spent months in the hospital to help make this show more realistic. You don't hook up with fellow patients, especially not in the so cliche supply closet. I've never met anyone in the hospital who has snuck out for a joy ride in a doctor's car or snuck in beer. Now I get that you need to get viewers and some of these scenarios had humor in them, which I loved - but try not to go overboard with these parts of "hospital life" because those situations are not realistic. The last thing I want is for society to think it's fun to be chronically/terminally ill, because it's not. It's terrifying. So please Red Band Society, I ask that you raise awareness in a way that will help give people a realistic look at what our lives are like. Please, don't romanticize the fact that I am dying. 

4 comments:

  1. Hi, I am Edward's mom. I have tried to post comments before but i have problems with computers. I am So sorry you are having so many problems. I do so much ressearch because of my son. I have followed your stories for a few years now. My son too was born with a heart defect that has called for many long and complicated heart surgeries. Total 6 plus 2 related surgeries. His last one was when he was 29. His first was when he was 2. Another one is planned soon. Docs say he won't survive another open heart so soon. The surgeries are very long so hard on him. So they are waiting, putting it off as long as possible. While he lives life as worry free as possible, he always knows whats coming. More surgeries for the rest of his life unless he can get a complete transplant. Waiting for when they start clinical trials on hearts grown from his own tissue and thst won't be too much longer. The emerging medical technologies are in the works for that. Growing lungs too. That could help you too. My son's heart and aorta looks like a patchwork quilt now. Parts of it are from donors. Are you aware of the technologies I am speaking of? How is your situation now? Sorry about posting this anonymous. Can't donit any other way. I have to go now but would like to give you some ideas for more help.

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  2. Hi!

    I don't feel like I am qualified to give too much medical advice, since I don't know what your son's heart condition is nor am I a doctor. However I would tell you to send records out. I live in Arizona but I have traveled as far as New York for the best medical care for me. I would ask for second opinions and go on support group pages to ask other heart families what they are doing and what doctors they are seeing.

    As for the transplant with organs that were grown from the patient's tissues - I don't think they are close to being finished. Plus I would much rather wait and see if the transplants are successful before I opt to have one with that technology. If after a few years they are successful and my doctors believe it's the best option for me - I will do that. I would suggest waiting till the transplants have some more statistics to back them up.

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  3. Dear Becca, thank you for putting into words what Jessica felt all those years. She missed out on sooooo much during her life and at times it seemed as though nobody noticed but me, her dad and her brothers until I went online and found so many other loving CHD families. I did what I could to make her life as normal as possible. We did a lot of arts and crafts since she couldn't ever run around, dance or do other things regular kids love to do. Jess was delayed and never progressed beyond the level of a 7 - 8 year old but she knew that she was missing out and it was painful for her to watch the world go by. Thank you for your honesty and for allowing us to see the world from your eyes.

    You are an amazing young woman and I'm sorry that your life is so very difficult. Know that you are influencing lives for the better even from your hospital bed. Your sacrifices don't go unnoticed. There are people who love you and pray for you all around the world. I am one of those people. ((hugs))

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