Five Feet Apart by Rachael Lippincott with Mike Daughtry and Tobias Iaconis : Book Review

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.

Five Feet Apart and My Reality

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.

On the other end of the spectrum are those appalled by the trailer, believing that no good can come from any publicity that has the balls to suggest that people with CF may actually stand in the same room, let alone touch.

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.

31 Days of Cystic Fibrosis: Part 6 May 26th – 31st

May is Cystic Fibrosis awareness month, and this year I’m doing 31 Days of on Facebook and Instagram. Please feel free to follow me.

May 26th – May 31st

31 Days of Cystic Fibrosis. May 26
Survival is a team effort
My decision to stay at home did not mean I was the sole person responsible for my health. I was surrounded by a team of people that were working together to keep me alive.

On a practical level, Mum was chauffeuring me to multiple appointments each week. Grant was preparing food, in charge of the hygiene requirements to keep my various medical equipment sterile, and in the last few weeks he took on the task of sorting out my IV medications and pre-preparing them for me. (All the while, both of them still had to attend their day jobs.)
Dale, my homecare worker from Cystic Fibrosis WA, came twice a week to take care of light housework and assist with physio treatments. John, my homecare nurse from CFWA, came once a week to change the dressing on my port.Physio staff from both hospitals compiled exercise and muscle strengthening programs for me – which I refer to as “pilates in bed”. In addition, Jamie did my lung function at clinic until it dropped that low that measurement pointless. (My last official measurement indicated that only 10% of my lungs were working.) Also at clinic, Paul the dietician kept an eye on my calorie intake and weight loss while Dr Joey kept an eye on my blood sugar levels.

Sue, or Aunty Sue as she is affectionately known, our Clinical Nurse Specialist, looked after my various scripts (including getting them filled) along with arranging my weekly tub of supplies full of syringes, saline, alcohol wipes etc and had them ready so that each Monday Mum could exchange an empty tub for a fresh one. Sue would also take blood from my port, and collect sputum samples to save me the walk to Path West. (Sue is an incredible woman and has an uncanny ability to read her patients. The less attention she pays to you the better, when she starts doing all of your fetching and carrying you know things are getting serious!)Uncle Gerry saw me in clinic once a week and would then liaise with Dr Mike to keep Royal Perth updated with my status (important for your ranking on the transplant list.)Behind the scenes were people I never saw. The pharmacist checking my various medications to make sure there were no contradictions, pathology staff checking all my various samples and various researchers over the world who developed new medications and technologies that had gotten me to this point (the new improved enzymes, ciprofloxacin, azithromycin and Pulmozyme).

Bonus Fact: During this time, I had one job. All I had to do was keep breathing. It may seem easy, but the effort required to lounge around in bed all day and continue to breathe was causing me to lose ½ kg a week despite my calorie intake being three times the daily recommendation. I was clinging to life by my fingernails.

31 Days of Cystic Fibrosis. May 27
Friday, May 27th 2011 – Transplant
Grant had gone to work, and I was reading in bed, Monkey tucked in my armpit. Our house phone rang. It rarely rings, most people knew to call my mobile. Normally I wouldn’t have worried, but I had a feeling this phone call was important.

By the time I’d unhooked my Bi-Pap, hooked up my oxygen and made my way to the phone it stopped ringing. I shuffled back to bed and sat for a moment staring at my mobile. As I weighed up the effort it would take to unhook my Bi-Pap versus waiting a few more moments to see if my phone would ring, it did.
Lungs had been offered. Lungs that had been matched to me.
When Grant and I got to the hospital, there was a sobering truth to face. In ‘normal’ circumstances, I would be prepared for surgery while under general anaesthetic, then ventilated while the surgeon checked the lungs to confirm he was happy for the surgery to proceed. Dr Mike told me my lung function was at the point that if I were to be ventilated, and the donated lungs did not pass the surgeon’s inspection, I would need to live in ICU while I waited for another offer. The compromise was I would go through and have all the various lines installed and primed, and would only be ventilated if the surgery was to proceed.
It is said that your life flashes through your mind as you’re about to die. When you’re primed for surgery and waiting on your lonesome, your life doesn’t just flash, you have time for reflection. I’d had a good life. I knew I was rolling the dice for a chance to have a future, knowing that I might not be strong enough to survive the surgery. I also knew that these lungs were my only hope.

Bonus Fact: On the 27th May 2011, it was 65 Roses Day, and my Aunty Mary had been planning to take me to have lunch with my Gran. I sent her a text declining her invitation due to having a “better offer”.

Extra Bonus Fact: I wanted to have a Facebook status of “Hi Ho, Hi Ho – it’s off for lungs I go..” posted after the phone call to confirm the surgery was going ahead. “He Who Was in Charge of the Communication Device” vetoed it.

Extra Extra Bonus Fact: My expert updo (pictured below) was skillfully arranged by my ICU nurse who used a rubber glove because we had no hair lacky available.

Extra Extra Extra Bonus Fact: Dr Mike had I had a conversation about what to expect in the ICU, and he asked if there was anything in particular I was worried about.
“Yes,” I said, “I’m going to need that ventilator tube out ASAP.”
“Why the tube phobia?” he asked.
“No phobia, but I think it’d be easier to complain without it.”
He didn’t look amused.

31 Days of Cystic Fibrosis. May 28
Monkey
At home, Monkey was slowly deteriorating. Grant asked my team when I would be allowed to see her, as he was worried she wouldn’t make it to see me come home. The clearance, he was told, would be given when I had all tubes and drains removed to minimise the infection risk. It was a goal to work towards.

8 days after my transplant, I had my final chest drain removed and on the 9th day I was cleared to leave my room. On the 10th day, Grant took me down to the carpark in a wheelchair where Monkey was waiting.
My beautiful girl, who had stuck with me through thick and thin, who over the years had spent many nights in the bathroom sitting next to me when my enzymes hadn’t worked quite how they should, who had stayed up late to sit with me while I injected my last dose of IVs’ for the evening, and who had been my constant companion ‘looking after’ me while I’d been waiting for the call that would change my life, was now too weak to jump out of the car yet at the same time was practically jumping out of her skin with pleasure to see me.
So, I gingerly climbed in the back seat and sat with her. My Monkey, who had never ever liked anybody to breathe near her, sat thumping her tail and sniffing my breath. Because my breath was carrying a message, it told her I was no longer dying, and because of this, she knew that she didn’t have to hang on to look after me any longer.
Bonus Fact: My oxygen cord had a limit of 20 metres. In the beginning, I could walk a little faster than Monkey could, so she’d sit on my oxygen cord to make me wait for her. Towards the end, as she was sleeping more and more, she started sleeping with my oxygen cord wrapped around her paws, so she could wake up if I moved.

31 Days of Cystic Fibrosis. May 29
Life Post Transplant

On the 9th day post-transplant, I had my first shower standing up in seven months. Afterwards, I remember looking at my battered body in the mirror. I was covered in scars, dressings and bruises and all I could think about was how great life was. Because I could breathe.
I was filled with a simplistic pleasure in knowing the enjoyment of something that most people take for granted. I could breathe, walk, and talk, all at the same time again.

These lungs are magnificent. They do what lungs are supposed to do, and they do it naturally and without effort.

That’s not to say that my recovery wasn’t without effort. I put in hours at the gym, followed by hours of walking. On the 3 month anniversary of my transplant, I walked 4kms in the City to Surf. It took me 56 minutes, which may not seem like much, but before my transplant, I couldn’t walk the full 20 metres on my oxygen cord without stopping.

Full recovery including adjusting to life post-transplant and the various side-effects of my new medications took 12 months. But every second of that recovery was worth it because even now there is still so much joy in simply breathing.

Bonus Fact: I have done so much in the last seven years, I’ve travelled, received industry awards for my library work, published two books and seen Jarryn turn 21. All of this possible because a family said yes to organ donation.

31 Days of Cystic Fibrosis. May 30
A Transplant is a Trade Not a Cure

On the surface, it looks like my transplant provided a cure, but that’s not the case. I will always be a person who has chronic health issues; I traded one set of health problems for another, the bonus being I am still breathing, still alive and ready to continue the fight.

My first complication had minor symptoms, my left hip ached, something that is seemingly innocuous. Investigations revealed I had avascular necrosis in my hip. Essentially the medication keeping me alive was also strangulating the small vessel that supplies blood to the head of my femur, causing that bone to start cracking. My team managed to stabilise the problem, but eventually, I will need a hip replacement.

Towards the end of 2013, I was displaying all the symptoms of post-transplant lymphoma – all my lymph nodes on the left side of my body had enlarged. However, it turned out I had a funky fungi instead, one that has a reputation not only for mimicking lymphoma but also for being fatal. It saw me embark on two years of antifungals — a treatment that caused massive damage to my skin and both precancerous and cancerous growths develop on my face, chest, arms and hands.

Bonus Fact: As far as my team are aware, I am the first person in Australia to contract this fungi after a lung transplant. There is no data on surviving this fungi on a long-term basis. Because of this, they don’t know if my funky fungi has been eradicated or if it’s dormant and may resurface again. The guys in the white lab coats were all very excited to have an opportunity to study something they had never seen before and nerded out over the results of my bloodwork, establishing that I contracted the airborne version of the funky fungi, and it then migrated to my blood, and not the other way around.

Extra Bonus Fact: Post-transplant lymphoma is caused by the very medications that keep transplant patients alive. Everything is a trade, always.

31 Days of Cystic Fibrosis. May 31
The Future

I hope that by sharing my story, I’ve raised a little awareness about what it’s like to live with Cystic Fibrosis. Now’s the part where I ask for a little help.

Recently, the first medication to treat the cause of CF was developed. It was unique in that every prior medical advancement had only treated the symptoms of CF. Getting Kalydeco on the PBS was a mammoth effort, but Kalydeco only treated a specific mutation of the CF gene. Orkambi is the latest medication. It treats the most common mutation of CF, identified as Delta-F508. It’s my mutation. I have a double Delta-F508 mutation.

As a person with Cystic Fibrosis who is post-transplant, Orkambi can’t help me – but there ARE people it can help, if only it were listed on the PBS. I can’t imagine how heartbreaking it must be to know that there is a treatment that doesn’t merely improve the quality of life but extends it, and not being able to access it.

To help those who can be helped by Orkambi, please consider adding your name and comments to the Pharmaceutical Benefits Advisory Committee
You’ll find Orkambi listed under LUMACAFTOR

http://www.health.gov.au/…/Cont…/PBAC_online_submission_form

Cystic Fibrosis Western Australia has played an important part in my life. As the end of the financial year looms closer, if you haven’t chosen a charity to donate to, I hope you’ll consider CFWA – they’re doing important work. Their mission is “Lives Unaffected by CF” Without their help, my life would have been significantly harder.

https://donate.cfwa.org.au/

And finally, if you’ve never had a chat about organ donation, talk to your family today. Let them know your wishes. Knowing their loved one’s wishes plays a huge part in families consenting to organ donation. It’s a hard conversation to have, but having that chat can save lives. It saved mine.

Bonus Fact: I have been extremely fortunate to arrive at May 31st 2018, aged 45, with the opportunity for more great years ahead. Many children born with CF are not so fortunate as the average life expectancy remains at 38 years.

Thank you to all the wonderful people who have helped me on my journey and without whom I would not be here to share this story. Thanks also to all of you who have taken the time to read my daily posts and share my trip down memory lane.

Finally, and most importantly, to my donor family, as always my eternal thanks and love for saying yes to organ donation in your time of loss.

XXX
Sandi

Missed the start of this?

Part 1 starts here