Kim Wood, 37, a Campbell River resident who has been dealing with cystic fibrosis all her life, is well known to the community for her tireless work promoting awareness of cystic fibrosis and raising funds for cystic fibrosis research. She also works tirelessly at doing her three hours of daily treatments and medications to try and stay as healthy as she can, all while know her disease is progressing. She felt compelled to give her perspective on the feature film Five Feet Apart currently playing in theatres around the world.
By Kim Wood
When I first saw the trailer for the movie, Five Feet Apart, I was worried it would be just another emotional teen love story that was so far from reality it would create a false idea of what cystic fibrosis actually is, while glamorizing living with a chronic illness.
When I saw the movie though, I found myself surprised and pleased by the authenticity of it and how accurate it was at portraying living with cystic fibrosis (CF). I understand the director of the movie had a lot of input from people with CF, and medical staff who specialize in CF care. This input really showed as the representation of what it is like to live with CF was surprisingly accurate.
The movie was actually inspired by Claire Wineland, an incredibly inspirational young woman who shared her thoughts and experiences through candid videos about living and dying with CF. I definitely saw that her experiences of living with CF were used and built upon in the movie. I felt myself completely empathizing with the main character because I could relate so much to what she was going through, simply because she was portraying CF so well thanks to the coaching she received from Claire. I give a lot of credit to the actors, Haley Lu Richardson and Cole Sprouse for the incredible job they did of showing the realities of CF and to the director, Justin Baldoni, for having the courage to pursue the story.
Of course, there was plenty of exaggerated and over-dramatic moments that drifted from the realities of CF and I would definitely say this movie was “hollywoodized” and meant to tug at your heartstrings. But I felt it actually depicted living with CF really well. From having to be hospitalized for so long you start to decorate your hospital room as if it were your own, going through sinus polypectomy surgeries and countless central line insertion procedures. Getting to know your nurses and doctors so well they become more like friends than caregivers, becoming someone who is so OCD about their meds and care regime just so you feel like you have the slightest bit of control over your own body.
It all hit pretty close to home for me. CF strips away so much from people living with it. Having to stand further than five feet apart from someone else with CF because it’s too risky for us to share dangerous and potentially fatal bacteria with each other (B. Cepacia is one of them which was described in the movie) is one thing people with CF really struggle with because it limits our ability to connect with one another. We can’t just go grab a coffee together and vent about our latest lung exacerbation or how long our care regime takes. Luckily there’s so much technology these days that we can still connect through social media, facetime or skype, but it’s not the same. There’s just something about being able to hug someone who’s been through the same awful things as you time and time again. I could see how that would make a compelling and complicated love story, perfect for a movie. Our lives are not movies though, which is probably a good thing.
I consider myself incredibly lucky and privileged to be where I’m at today. There have been some incredible gains in cystic fibrosis care and research and I’ve been fortunate enough to be a part of one of the recent studies for a new medication that’s treating the underlying cause of CF which has had truly amazing and positive results. As I look back over the years of all the fundraising we’ve done in this community, I can’t help but get emotional because I’m now really benefiting from it all. This community has always been so generous towards the Campbell River Cystic Fibrosis chapter and I’m literally here because of it. After more than 37 years of fundraising, we’re now really seeing the benefits of it all. But there’s still so much that needs to be done.
So if you’re feeling inspired and compelled to help make a difference in the lives of those living with CF, come to this year’s Walk to Make Cystic Fibrosis History which is happening on Sunday, May 26. It’s a super fun family and pet-friendly 4 km walk that starts at Penfield Elementary at 10 am. There will be lots of fun activities for kids, a BBQ after the walk and lots of prizes, but most importantly, it raises money that goes to Cystic Fibrosis Canada towards CF clinical care and research that is truly making a difference.
I won’t spoil anything about the movie but I will say, Five Feet Apart doesn’t necessarily leave you with a feeling of hope. Let’s just say it stayed true to its sad love story category. But the great thing this movie did was it portrayed CF as the truly devastating disease it is and hopefully helps raise the kind of awareness we have never had before.
CF is a rare and invisible disease. I’m hoping that if you see the movie, you’ll get a glimpse into what my life has been like in a lot of ways and that it gives you a sense of perspective and appreciation for what you have. I’m filled with so much gratitude every single day I’m not stuck in a hospital room, hooked up to tubes. Because of this community’s generous support over the years, and those who have donated to the CF cause, I am here. And I am so over the moon beyond thankful for that.
If you’d like information about this years Walk to Make Cystic Fibrosis History, please visit https://www.cysticfibrosis.ca/walk/2019/ or the Cystic Fibrosis Canada, Campbell River/Comox Valley Chapter facebook page.