Favourite Quote: “She should have told you, but I understand why she didn’t. Why no one did. It would have changed everything, made it something else, something tragic and heartbreaking when it wasn’t any of those things – not until now. And knowing the truth, it would’ve been everywhere – in every gesture, every thought, every moment. You wouldn’t have known what was real and what was because she was dying. What you’ve shared is real and nothing can take that from you – not even the truth.”
If I Tell You by Alicia Tuckerman
If I Tell You is a coming of age story set in a rural Australian town. A small-minded town where homophobia is rampant. A book can be many things to different readers, and for me, Phoenix’s story was much more relevant than that of the story of Alex the narrator.
On the surface, Phoenix seems a superficial character. A girl who is brazen about her sexuality and determined to have a good time. So much so, that throughout several conversations, Phoenix gives Alex some not-so-delicate nudges to come out. Viewed in isolation it could seem as if Phoenix was trying to shame Alex, but Phoenix is a far more complicated character – She’s also a teenager living with a time bomb.
Many reviewers have expressed their surprise at what they have perceived as a plot twist with the reveal of Phoenix’s illness in the closing stages of the book. Yet Tuckerman has cleverly woven the groundwork into the core of Phoenix. The knowledge of her impending death taints all of Phoenix’s actions.
Phoenix’s motivations were abundantly clear to me early on. Although I didn’t know why she was dying, I was never under any doubt that she was dying. Perhaps it was because Phoenix spoke my language. The differing view of the world that comes from living with an expiry date hovering over your shoulder. The things we don’t take for granted, the way we avoid or brush off questions about the future. And the way families in this situation embrace every moment because they know that one day all too soon those moments will be gone.
But most of all I understand Phoenix’s reluctance to tell Alex. It’s a thought that sits at the back of your mind as you wonder time and time again if now “is the best time to tell”. Occasionally telling can bring its exquisite joy and a deeper relationship, but for the majority of times, a confession about the expiry date hanging over your head is a death knell.
“She should have told you, but I understand why she didn’t. Why no one did. It would have changed everything, made it something else, something tragic and heartbreaking when it wasn’t any of those things – not until now. And knowing the truth, it would’ve been everywhere – in every gestures, every thought, every moment. You wouldn’t have known what was real and what was because she was dying. What you’ve shared is real and nothing can take that from you – not even the truth.”
Favourite Quote: “For years I’d been so okay with dying. I’ve always known it would happen. It’s been this inevitable thing that I’ve lived with forever, this awareness that I would die long before Abby and my parents. I was never, ever ready to grieve, though.”
The release of the Five Feet Apart cinematic trailer caused a dash of controversy in the online CF community – you can read my thoughts here – so I have no doubt that the book will also cause some people to tear at their hair.
Five Feet Apart
This isn’t a #ourvoices story – but it’s important to note that there was a great deal of consultation, including that of Claire Wineland, and that shines through in the writing.
As always in a fictional book that includes a character with CF, some things niggled at me.
First and foremost – although some transplant centres will not accept people who culture B. Cepacia there are those which do and people who have cultured B. Cepacia CAN have successful transplant outcomes. I feel inclined to give this one a pass – because that would be tricky to explain and it’s a much better storytelling technique to draw a line in the sand and raise the stakes significantly.
I have a slight problem with Barb disclosing to Stella that Will has B. Cepacia (significant patient confidentiality breach there) however the point I raised above about storytelling techniques also addresses this problem.
Aside from the obvious Med cart rearranging issues, Stella is initially portrayed as a guideline freak. At that point, she doesn’t know Will enough to bend the rules for him. There is NO WAY she would go into Will’s ‘B. Cepacia laden room’, makeshift hazmat suit or not. FULL STOP.
Stella and Will using the gym together also raised a red flag as something that would never happen in Australia. Here, we get our exercise equipment in our hospital room for the duration of the stay. I wondered briefly if the US is different, but can’t see any hospital guidelines ever being okay with this.
Will, sneaking into pre-op. Yes, it made for a good story but seriously WTF? I explored/poked my nose into many areas of the hospital that are off limits for patients, but this incursion would take more than a small miracle to pull off.
Stella in the pool – surely she had either a PICC line or port. And what about her infected G-tube?!!
As a side observation, and it’s something I see in movies generally, not only with depictions of people with CF, what’s with carrying oxygen bottles on your back? Those things are HEAVY. I got exhausted wheeling mine. Carrying my handbag, which only weighed about 5% of the weight of an oxygen bottle was exhausting enough.
On the surface, they sound like a lot of niggles – but compared to other books that get CF life very, very wrong, it’s not. And of far more importance than niggly technical medical details that can change from person to person or country to country the emotions and characteristics of living with CF were spot on.
The descriptions of the ward and hospital corridor hijinks took me straight back to the early ’90s and B Block at Charlie’s, (except our technology back then was far less sophisticated and involved calling each other’s rooms on the good old corded phones). To nights that were spent roaming dark hospital corridors, filled with shenanigans and practical jokes that we played on our fellow inpatients. Both Barb and Julie reminded me so much of the B Block nurses – like Barb and Julie in the story, the B Block nurses didn’t simply nurse us they became part of our lives.
Hospital Hijinks
This story perfectly some of the experiences and emotions that come hand in hand with living a life with CF. And while not every nasty little symptom of CF was explored, the ones that were gelled for me. Although never on a rooftop, I can’t even begin to count the number of times I’ve coughed until my vision blurred with black edges, knowing that if I can’t drag just a little more air into my lungs, I’m going to pass out.
Been There, Done That!!!
Of a more general story nature, yes, Will is the bad guy and Stella is the goody-two-shoes with her to-do lists, and yes it’s a love story about two sick teenagers. And yes they are far more physically active dashing around the hospital than any person with less than 40% lung function should be.
Trope, trope, trope.
Tropes may not be for everyone, but sometimes they serve a purpose. Some readers like to know the type of story they are investing in. Many storytellers display chronically ill people dashing about here and there because frankly, no-one wants to read (or watch) someone who is chronically ill slowly climbing stairs one solitary step at a time. It might be more realistic to depict CF this way, but the primary objective of this story is to entertain first, educate second.
Being frank – this isn’t a masterpiece of literary writing, and that’s okay. The literary genre isn’t everyone’s cup of tea, and even those who like deep and meaningful stories sometimes like to lose themselves in an easy emotional heart-tugging read. This story is exactly what it’s trope promises it will be – an emotional read designed to tug on the heartstrings.
Not everyone in the CF community is going to agree with me, especially those who view the cross-infection guidelines as a rigid, inflexible rule – but this is the first fictional story I’ve read with characters with CF that got more right than wrong. As both a writer and someone with CF, I can see why some of the realities were blurred to create a better story for the reader – so that makes Five Feet Apart a win from me – with bonus points for not going for the predictable ending.
It was so hard to choose my favourite quote – so I’d like to indulge in two more:
“Cystic fibrosis will steal no more from me.”
and
“Those lungs are a chance for a real life”
“New lungs? Five years, Will. That’s the shelf life of them” …
“Five years is a lifetime to people like us, Stella.” I said.
When the cinematic trailer for Five Feet Apart was released, mixed reviews emerged from the online Cystic Fibrosis (CF) community virtually overnight, and they crossed a wide range of emotions. Some believe that any publicity for CF is beneficial – both for public understanding and for awareness – and if the details aren’t quite accurate, that’s just Hollywood.
The issue of cross-infection has been the subject of raging debate in the CF community for decades. Guidelines, also known as infection control protocols, differ from country to country, and even from clinic to clinic.
But this wasn’t always the case.
Born in the early 70’s, I grew up surrounded by other children with CF. We played together, shared hospital rooms and our social highlight was always the annual camp. Camp was a place where we were no longer the only child who had to take handfuls of capsules before we ate, no longer the only child who couldn’t play because it was time for physio. Instead, those things that marked us as different were our shared normal.
Cystic Fibrosis Western Australia CF Camp 1980. Photo from West Australian, April 28th 1980
Towards the end of the eighties, cross-infection was a buzzword that I never paid a great deal of attention to. At the time, I was sharing a house with other people with CF. Because of my choices, I was warned repeatedly it was inevitable that I would cross-infect. I accepted that inevitable risk and did nothing to prevent it, engaging in all the activities that were frowned upon. We shared bedrooms, food, drink, and not only did we do physio in the same room, we also shared a physio table.
For a while, I even dated another person with CF.
When Burkholderia Cepacia reared its ugly head, whirling through our tight-knit community, it fractured life as I knew it. Cross-infection, the buzzword I’d ignored, became a much bigger deal. We were segregated, classified and ranked by the bacteria we cultured – into those who had Burkholderia Cepacia, and those who did not. The segregation that was designed to stop cross-infection saw policies designed that treated some people as walking health hazards, and they were not welcome on the same clinic day or invited to officially organised events and fundraisers.
This time I paused to take note. I view the cross-infection guidelines, for what they are. Guidelines. I work within those guidelines, by following good practice and not taking stupid risks, but ultimately, outside the hospital and clinical settings which have a duty of care to their patients, the decision to remain in personal contact with my friends with CF is my own.
These people are my family, my tribe, an important part of my identity, my sense of self – even if they could no longer be part of our official social gatherings, I was not prepared to cut them out of my life altogether. So I stayed in contact with my friends who cultured Burkholderia Cepacia within responsible infection control guidelines. We met in the open, we stopped sharing food or drink, and most importantly, the hugs and kisses goodbye ceased. While our social gatherings were a risk, they remained a known, and therefore manageable risk.
Cross infection for people with CF has become a minefield. It seems that every year the guidelines change, and now its normal for a person with CF to grow up isolated from other people with CF. Despite all these preventative measures, which can include cleaning and sterilising clinical rooms between patient visits, even those people with CF who have never had known contact with another are still contracting Pseudomonas, Burkholderia Cepacia and other infections.
Is it the fault of the cross-infection guidelines?
Are even these extreme measures not enough?
Here the answer is more clear cut, bacteria that thrive in CF lungs also grow in the environment. Naturally.
People with CF might be able to avoid one another successfully, but they can’t avoid life.
For me, the knowledge that cross-infection between people with CF was not the only method of contracting bacteria is why I chose my mental health over what I consider a feasible and manageable risk. I know that my identity and my sense of belonging would not be the same without my friends with CF. No one truly understands me like my friends with CF do. I don’t have to explain, they understand me because they are my tribe.
I cannot begin to imagine how isolating it must be to grow up feeling different, never meeting anyone else with shared experiences. I don’t know of any other disability or chronic illness where contact is frowned upon, making this isolation unique. I know that without my CF friends my mental health would have suffered.
Does cross infection exist?
Undoubtedly.
I have friends who cross-infected. On the other hand, despite living together without preventative precautions my housemates and I never cross-infected. It’s possible that I avoided cross-infection while living with other people with CF by sheer luck, I’ll never know. But I’m confident of this – I don’t think luck has played any part in the years since.
Another person with CF is a known risk,
one that is manageable.
It’s the unknown risks that scare me.
My friends with CF have never coughed on me, never kept a lunch date when they have had either a raging infection or a common cold because, like me, they know what damage these seemingly innocuous illnesses can do. They know it is better to cancel, to not take that risk.
I wish I could say the same for everyone else I encounter. Especially the people who lurk near me, as they complain how dreadfully ill they feel, while they cough and sneeze contaminating my surroundings with their germs. The same germs, which for me, can mean more than a slight inconvenience and result in weeks in hospital.
Despite personal opinions, whether you are a rule breaker or someone who follows the guidelines to the letter, the desire for contact, for your tribe, is an inbuilt human trait. It is something we need to thrive, and as much as an online community can try to substitute, it will never replace personal interactions.
In storytelling, emotion is a far more powerful tool than facts – and if the movie lives up to the trailer, it’s this emotion that Five Feet Apart has gotten right.
