It’s 4am I cannot sleep because my medication isn’t touching my pain tonight. My bladder has been in a spasm for the last 2 hours, my feeding tube is itching me like crazy and my head is pounding. I get up to go the toilet for the millionth time and use the wall to steady my wobbly legs.
Meanwhile, in the latest film about a young woman battling a killer disease, a scene depicts her sleeping soundly, no pain lines etched across her face. She sleeps in perfect, unsmudged make-up, her hair spread out on the pillow like a Disney princess. I catch a glimpse of myself in the mirror; my cheeks are blotchy, my eyes are red and my hair is sticking up like a toilet brush. How does she do it?
Unlike a lot of people who have written about the ‘rising popularity’ of cancer and chronic illness books/films and the inaccurate romanticising of serious illness, I actually quite like them. The Fault In Our Stars by John Green, is one of my favourite books. I read it in three days and equally love the film. I have two books from the If I stay series written by Gayle Forman waiting to be read, Dakota Fanning’s ‘dying teen’ film Now Is Good is on my shelf waiting to be watched and I can’t wait to see Jennifer Aniston’s film Cake, about living with chronic pain.
I like them because, despite the glamourising, despite the ‘even people who are sick have a better life than me‘ message they unintentionally give the viewer, I can identify with the character. I may not look as hot as they do when I throw up, I may struggle to get to the corner shop, never mind jump on a plane and fly half way around the world and still make it to breakfast the next day, but I can identify with the fear, the loss of friends who share the same condition and the need for hope.
In The Fault In Our Stars, Hazel, played by Shailene Woodley, is a young woman with terminal cancer. She is attached to an oxygen tank 24 hours a day, attends a support group and is alive thanks to a miracle drug. She falls in love, has to deal with death and watch her family give up their lives not only to care for her, but to ensure they share every possible moment together before she dies. She talks about death in an honest and frank way while suffering the loss of friends to the same disease. When she is rushed to hospital, she is supported by a wonderful team of doctors and nurses, her family always by her bedside. In all of this Hazel looks pretty stunning throughout, even with the paled skin and slightly sunken eyes during critical episodes. Her hair, well her hair just looks beautiful.
The fact that these characters look so well, so bold, beautiful and unaffected is why genuinely sick people are reacting so negatively. While trying to depict serious illness, these films give the impression that it is also fun, easy and sexy – even if they throw in the odd medical tubing, some pills and a vomiting scene.
When you are sick, really sick, you look just as ill as you feel. I try to have fun; it’s not so easy and rarely am I sexy. I have a multi-systemic condition that affects my connective tissue. It affects my muscles, joints, skin, organs and my nervous system. I am in pain constantly, my digestive system doesn’t work, I use a wheelchair and most of my energy is used just trying to hold my body together.
It is exhausting.
My autonomic nervous system is a mess, which means all the things you don’t consciously think about in order for the body to function don’t work very well. My heart, blood pressure, sleep cycle, breathing, digestion, temperature control and hormone regulation don’t work correctly.
I often don’t sleep at night so I’m exhausted during the day and my hair, well my hair just looks a mess. I have suffered from severe hair loss a number of times from complications of my condition – baldness is itchy and headscarves are a pain to keep straight. My hair has grown back again, this time curly with a vengeance, but at the age of 34 I have an obvious spattering of angry grey hairs.
I only wear make up for special occasions because it uses energy to apply it that is in limited supply. I need that energy to work or to simply stay upright some days. My words fall out of my mouth in a jumbled mess unlike the highly philosophical Hazel who is able to hold conversations filled with complicatd words I can’t even remember an hour later due to brain fog.
In real life, hospitals suck. Doctors and nurses are great at what they do but they aren’t like Hollywood doctors. If you have something rare or complicated, they mess up a lot and you suffer as a result. They don’t have time to stand by your bedside and encourage you or to hold your hair back while you throw up. They dump a pile of sick bowls on your bed and you are lucky if they have time to come and remove the stinking-filled tubs before the end of their shift. Family are restricted to visiting times, you share a ward with strangers and you rarely get any sleep. Miracle drugs aren’t trialled one after the other. I was refused funding for a bowel pacemaker that would allow me to go to the toilet. Instead I had to have nurses come to my house three times a week to give me enemas. I am restricted to two pills per week that stop me from vomiting because they are expensive and I’m given one syringe per week to flush my feeding tube. If I drop it, lose it, break it or have to pull out 60mls of bile from my tube…tough.
While Hazel and her friends talk about ‘Cancer Perks’ (freebies and benefits such as a free holiday, signed sports equipment and being able to stay in bed all day without being challenged), I struggle working 35 hours a week as an artist and writer, barely making a profit most months. I have to work from my bed on tough days and the only freebies in my life are the boxes of medical supplies that take up half my house. My illness isn’t romantic like it is in the books and films.
However, like Hazel I have watched friends die from my condition. I have sat outside, away from others and cried at the thought that I may be next, or that I simply am not strong enough to cope with another day of pain. I have wept for the aspects of my life that I have lost, the friends, the opportunities, the 9-5 job with an actual wage and the luxary of a mortgage. I have feared for my future; how long will I have with my wife? Will it hurt? I have searched for hope, found it, lost it and found it again. I have prayed that my life will make a difference to one person, that I may have some importance somewhere in the grand scheme of things.
I have loved, been loved, laughed with friends and taken my anger out on an unforgiving glass vase. I have seen my family grow closer, pushed them away and pulled them in even closer still. I know the inside of all the local hospitals like the back of my hand, I’m on a first name basis with my doctors and wouldn’t be without my support group. I have a bucket list, it changes a lot. I think life is unfair, I think life is beautiful. I hate my life, I love my life. I do have fun.
These films and books are not about depicting illness as accurately as possible. An author cannot express something as complex as dying or chronic illness if they haven’t personally experienced it themselves and I for one wouldn’t wish my illness on anyone. For me these books and films are about giving people who are chronically or terminally ill a character they can identify with. Just as Hazel identifies with the character in her favourite ‘cancer book’, so I identify with her. I identify with her hope. I identify with her passion and her determination to live the life she has.
These stories are not for healthy people to see our struggle, they are for the sick people to see their own struggle and be proud of what we have achieved. They are our voice to ourselves and others like us, to encourage us when we have those days from hell, to know we can turn on the tv or pick up a book and know there is someone there who knows exactly what we are going through.
I may or may not have inspired someone by the time I die. It would be nice if I did, but what is more important is that I inspire myself. I want to know that I did my best, that I had fun. It might not have been easy, it certainly won’t be worth making a film about it, but if I can be sexy doing it then that is a bonus!