Realities of Terminal Illness

Romanticism of terminal illness is nothing new in the media. Beginning in the 1800’s with Edgar Allen Poe and the trend of having tuberculosis, writers, musicians, and eventually filmmakers would cash in on the phenomenon that disease is sexy. Yet films such as The Fault in Our Stars and television shows such as Life Sentence leave out many of the realities of dying a slow death from a terminal illness, and instead present audiences with a romanticized ideal of an attractive, active person doing all sorts of once in a lifetime activities with no consequences whatsoever. This is not what happens with terminal illness. How do I know? I live with one.

In October 2014 I was diagnosed with Von Hippel Lindau disease, known as VHL for short. With VHL, one is not able to properly regulate tumor growth in high blood vessel areas of the body, and as a result, develops cancerous and noncancerous lesions in areas such as the brain, spinal cord, kidneys, adrenal glands, eyes, inner ear, pancreas, and lungs. The life expectancy ranges from about 40-50 years. Willem Dafoe described VHL as “having cancer again, and again, and again.”

I live with tumors in my pancreas, eyes, adrenal glands, spine, and inner ear, and it is no picnic. I have undergone treatments such as photodynamic therapy, a form of targeted chemotherapy designed to treat tumors in the eye, as well as other treatments. I am legally blind in my left eye, and have limited vision in my right. I have blood pressure regulation issues, blood sugar issues, fibromyalgia, migraines, ear pain, asthma, and depression and anxiety, all from tumors. It is a struggle some mornings just to get up and go to class. On better days, I  find myself tired before I finish my homework or in too much pain to attend a social club meeting. My illness makes daily life a struggle, and yet the media does not understand that when one has a terminal illness, they are not going to be able to “live life to the fullest.”

TV and film portray terminal illness as a “get out of jail free” card from all of life’s consequences. In reality, one is aware that due to their limited time on the planet, if they want to have any impact, their choices have increased consequences due to the limited time. Young adults with terminal illnesses do not have to go to school on screen. In reality, I had to return to high school a day or two after chemotherapy treatments if I wanted to keep with the school system’s strict guidelines. When a nurse brought up homeschooling with my mother, my mother lashed out, claiming “she needs a real education if she’s going to be able to afford the treatments she needs.”

In the movies, people walk into hospitals in cute outfits and full makeup, holding an overnight bag and smiling. In reality, one is in sweatpants and even as an adult clutching a teddy bear, terrified of what horrors await. Most fictional protagonists have a love interest whom they have a relationship with as a result of this horrific and devastating disease, but in reality, dating with a terminal illness is incredibly difficult. It’s like having an obnoxious friend trail along on outings, and not knowing if one’s partner would be okay with having one die approximately thirty years prior to them. VHL has ended more than one relationship of mine, once because the person made my cancer diagnosis seem like a bigger burden to him than me, another because the person did not want to bury their significant other at a young age. Fictional productions romanticize the realities of living with a terminal disease, and in order to procure better treatment for the terminal, this must be stopped.

It is possible to show terminal illness in a realistic light, and several fiction works do it quite well. Side Effects by Amy Goldman Koss takes a hard look at what it is really like to be a fourteen year old girl with cancer, and she includes every vomit filled detail, unlike majority of media adaptations. The musical Rent looks at HIV/AIDS in a hopeful but realistic light by showing characters who are ill but attempting to prologue their lives with AZT and searching for meaning when given a death sentence. The Theory of Everything is perhaps the best example. Stephen Hawking and his wife, Jane, suffered from marriage deterioration from Hawking’s illness, and Stephen never gave up in his pursuit of knowledge and wisdom, despite his suffering. Terminal illness is not something to be romanticized, as there are more negatives than possible positives with dying. Hollywood would do well to learn from these examples, but until then, I personally will be skipping the latest sentimental tearjerker where the protagonist dies at the end.

A scene from the trailer of Life Sentence, part of which was filmed on Oxford’s campus

2 Replies to “Realities of Terminal Illness”

  1. I’m a 21 year old college student now and have been dealing with VHL since my first cerebellum surgery when I was 13. This semester I permanently lost hearing in my left ear, have treatments for my eyes about every month, have more cerebellum surgery scheduled for May and have my first RCC kidney surgery projected for this summer. I’ll agree it is a tough diagnosis to cope with and really be productive especially when you get knocked out of the game for a few months to relearn to walk after operating in the cerebellum. I remember balling the first time I saw the fault in our stars on a date. I’ve had complications with a past relationship where my anxiety and need to be cared for during recovery partially led my ex to cheat and leave. It’s hard to avoid the medical conversation when I have large obvious scars on my head so people tend to find out my situation pretty early if they’re curious, like first date early lol Things like that suck but you just have to keep swimming 🙂 On top of this i’m openly gay and come from a lower class family where financially times were really tough and for a time we were on Cobra insurance which is a last resort. I’ve fallen into periods of intense anxiety and depression but as I come out of it I just regret all the time I spent curled in a ball in my bed all day. I wouldn’t say i’m grateful for the disease or my families income or my sexuality but I really do believe these aspects of my life have shaped me into a stronger person. I’m doing really well in college, have multiple jobs (big boy jobs), have a wide social circle, and try to give back through volunteering as much as I can because someone out there always has it worse than you and helping others often make my problems more bearable. As I count down the 38 days until my brain surgery I try to think of these days as if they were my last even though i’m confident they won’t be. Be spontaneous, live a healthy lifestyle, help others, be grateful for the relationships you do have and possibly could have! Everyone loves an underdog story and people who are positive in the face of adversity. I hope a synopsis of my journey so far can help you in some way! Good luck to you! Try to live life to the fullest and enjoy the time we DO have here, ignoring the the time we may miss out on. A good life isn’t measured in years, but in the wealth of experiences and relationships 🙂
    VHL conquerer

Leave a Reply

Your email address will not be published. Required fields are marked *