On March 2, I was lucky enough to see an advanced screening of Five Feet Apart.
For those of you that don’t know, Five Feet Apart is about three people with Cystic Fibrosis going through treatment in the paediatric ward of a hospital. One is in hospital for a drug trial, one is there for a tune up, and another is waiting for transplant.
As most of you know, I have Cystic Fibrosis. I have had two double lung transplants. I have been in situations these characters have been in.
When talk of this movie started, everyone was very worried that it wouldn’t portray CF in the right way. Well, you were wrong about that. It is NOT the doctors or nurses who allow these two characters to be together. It is the characters OWN choice, to put their lives in danger. For those with CF, have you never put your life in danger so you can just live a little?
All contact precautions are followed. Gloves, mask, gown, booties, you name it! They follow infection control to a T. Every patient has a mad cart, does inhaled treatments, does physiotherapy using a vest, goes to the physiotherapy room to get exercise in, takes about 200 pills a day, they are on oxygen, they talk about death. This is Cystic Fibrosis. This is leaving your house or hospital room to risk your life just so you don’t down in your own bodily fluids (Hint: “Having CF is like drowning, but instead of water, it’s our own bodily fluids” is a line from the movie).
Having a chronic, terminal illness can cause severe mental health issues. You can become extremely anxious, depressed, and develop OCD. All of these are show cased in the film. One character is depressed and has stopped doing his treatments all together because he knows he is going to die anyway. Another patients is very strict with her regimen to stay alive. She built an app for her phone to remind her to do her treatments and take her meds. “I’ve been living to do my treatments instead of doing my treatments to live”. (Another line from the movie).
I can honestly say I have been in the “I’m going to die so why bother fighting?” scenario more than once. There was one day waiting for my second transplant. I couldn’t leave my hospital room without having a panic attack. My anxiety was so bad, I was being treated with morphine, gravol, benadryl, and ativan. I couldn’t even sit up in bed without needing help. Any pressure on my abdomen hurt. I didn’t have the strength in my arms to pull or push myself up. I needed a wheelchair to get to the bathroom in my own room. I couldn’t breathe through regular oxygen nasal prongs because my sinuses were so congested. I had to use a full face mask. The breathing treatments I was doing were leaving my face very sticky. Every time we took off my mask, bits of skin would come off with it, just ripping my face apart. I sat there with my mom, telling her I couldn’t do it anymore. I couldn’t breather, I couldn’t walk, I couldn’t take my medication without help, I couldn’t even handle her leaving the room to get a coffee without just about suffocating. When my mom left the room, my nurse would have to come in and sit with me. One night, was just awful. I couldn’t settle down. A particular nurse, Zubaida, came in every 20 minutes and would rub my back for about 5 minutes so I could settle down. I sat down with my mom and my doctors. Telling them I wanted to go on life support and that I was done being a burden on everyone. The doctors informed me that if I went onto life support, the chances of me getting lungs would drop significantly. I chose not to go on life support. Two days later, I was rushed to the ICU because my CO2 levels were so high, I was border line in a coma. just eight days later, I received the call. I was getting new lungs. On June 4, 2017, I received my second set of donated lungs.
Now, I am 100% on top of being healthy. Looking after myself. Advocating for myself. Doing what I need to do to give these lungs more than a “five year shelf life” (another line from the movie). I make sure I eat right, I get on antibiotics as soon as I have the smallest tickle in my throat, I exercise, and most importantly, I advocate for those that can’t anymore.
There was also a lot of comparison between Five Feet Apart and The Fault in Our Stars. In the book and movie, The Fault In Our Stars, it is about two cancer patients. Cancer cannot be passed down from person to person. With Cystic Fibrosis, one bacteria that is primarily in found in patients, can we lethal and passed down from one CF patient to another. This can be from just touching the same door handle. Cancer and Cystic Fibrosis are both terminal illness’. There is no cure for either. With cancer, you can be treated with aggressive radiation and chemotherapy and still go on to live a healthy life. With Cystic Fibrosis, you can be on oxygen, have a feeding tube, be on IV antibiotics, had a lung transplant, and you will still be considered a ticking time bomb. The slightest sinus infection can turn into a full blown chest infection. Obviously there are the same dangers with Cancer. But with CF, there is already too much damage to the lungs for recovery to happen most of the time.
In my opinion, Five Feet Apart showed the good, the bad, and the ugly of living with Cystic Fibrosis. I am very proud of Claire Wineland for helping them with this movie. Teaching them how to cough properly, about the treatments, the medication. I can relate to each of the CF patients in Five Feet Apart and I know many others will be able to as well.
Five Feet Apart: In theatres March 15, 2019.
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