Cystic Fibrosis: Cinema’s Cure and Contribution

I step on the scales. The metal is cool and the ridges dig into my feet. The numbers on the screen increase rapidly, stutter and come to a halt. 80.3 kilograms. Three less than last month.

I sit beside an LCD monitor. A mouthpiece is handed to me. I suck air into my lungs and release as fast as I can. A graph plots my performance. Lung function is at 96% capacity. Two percent less than last month.

A swab is placed in my mouth. I huff and cough. Will the bug still be there from last month?

It is. A two week stay in a hospital ward is on the cards.

A life with cystic fibrosis is a life of caution and anxiety. Above is the protocol of a monthly check-up with the local consultant. For some, the two-week stay is a regular occurrence. It usually involves an intravenous drip fed through a long-line in the arm; frequenters have a permanent cannula positioned in the chest. Antibiotics are fed through the tube three times a day and daily visits from a physiotherapist consist of numerous breathing exercises of varying intensity.

Cystic fibrosis (CF) is a life-shortening, inherited disease caused by a recessive allele. 10,000 people in the UK suffer with the faulty gene. The movement of salt and water is affected in the body, resulting in the build-up of mucus in the lungs and the digestive and reproductive systems. Enzyme tablets allow the patient to digest food and put on weight. Regular antibiotics, inhalers and physiotherapy can help keep the lungs healthy. The chances of conceiving are virtually none.

We have a life-expectancy of thirty-five to forty years.

Being a somewhat outgoing and active person, to look at me you would not think I had the condition. On my better days, I feel like I can run for hours. On others, climbing the stairs is enough to hammer the fact home. At the back of my mind, I question how long my lungs will last.

I know one day, CF might claim my life. But the plan is to live to a hundred.

I like my chances.

However, as CF is one of the most common genetic diseases in the world, the lack of public awareness is baffling. Though the condition’s depiction in the media is somewhat small, it has still carved out its own niche in the entertainment industry. Documentaries, films, TV. Many components of the pop culture spectrum have tackled CF at one time or another. How successful they were is another question entirely.

Here are some of the top few …

4. The Pros and Cons of Breathing (2006)

The Pros and Cons of BreathingAt twenty-five minutes, Bill Balas’s The Pros and Cons of Breathing is hardly an ordeal to sit through, though it packs as much force as a Scorsese gangster epic.

Having the same run-time as many sitcoms, any film fan would implore you to swap the studio-audience for a much more fulfilling experience.

The AFI-produced short film follows the story of Jude, a young CF patient who realizes that his life is coming to an end. He awaits a transplant that doesn’t seem to be coming and decides to risk what little time he has left on a high-risk robbery that may kill him before the disease does.

This is a gritty noir, with a beating black heart, that speaks volumes for young adults with the condition. Should we accept the inevitable and live life on the edge? Should we disregard the rules and do what we want because we don’t have what healthier people might have? While many of us decidedly stay on the safe side of the law, one cannot help but feel empathetic towards Jude. He understands he will die but wants to be the master of his fate. His moral choice may be questionable but is certainly identifiable and not beyond reason. Although you cannot agree personally, you respect the choice of action nonetheless.

3. Sick: The Life & Death of Bob Flanagan, Supermasochist (1997)

SickKirby Dick’s Sick: The Life and Death of Bob Flanagan, Supermasochist is the definitive documentary detailing the final years of extreme stunt and performance artist, Bob Flanagan.

Diagnosed with CF at an early age, Flanagan pursued a career that pushed the boundaries of an already ailing body. You would think that knowing your life was threatened by illness would push you to take extra care. He saw differently. Whether it was the psychological pressure of the disease or something else, Flanagan delved deep into masochistic practices, inflicting torture upon himself in the name of art and entertainment. He died from his condition aged forty-three. This is his legacy.

The film is not for the squeamish or easily offended. Dick is unflinching and ruthless in his portrayal of Flanagan. During the more intense moments, he focuses the camera solely on the act and doesn’t stray until it is over. One scene has gained particular notoriety, showing the subject unerringly drive a nail through his penis and cracking jokes all the while.

Whereas you can sympathize with Jude in The Pros and Cons of Breathing, it is through sheer horror that you cannot do the same with Flanagan. His inflictions are brutal and walk a fine line between entertainment and straight gore, which is eventually erased (you cannot take your eyes off the screen, whether you enjoy it or not). Yet the film forces you to question what was happening in the man’s mind. Was his disregard for personal well-being brought on by CF? Was it a case of accepting the inevitability of death and seeing life as nothing but a cruel buffer?

2. Alex: The Life of a Child (1986)

Alex The Life of a ChildSomewhere between the first and second Poltergeist films, Craig T. Nelson made this gem of a TV movie. Never released on DVD, Alex: The Life of a Child proves that a film can be incredibly successful in what it wants to achieve, no matter how small it is.

Based on the book of the same name, the film tells the true story of the Deford family. Frank is a writer for Sports Illustrated who learns that his new baby daughter has CF. Shocked and terrified, he and his family show the same bravery that Alex shows herself; and the courage to cope after her death.

A terrible truth, many children born with CF in the 60s and 70s were expected to die a very early death. It is in such a truth that the film manages to thrive. Nelson, for all his film and television roles, has never been better as the struggling father. This is something Life of a Child captures elegantly. Though the eponymous Alex is suffering with CF, the lasting effects and strain the illness has on the victim’s loved ones is equally unbearable – often overlooked in other works.

Graceful and compelling. Heart-felt and harrowing. The film is undeterred in its portrayal of a family afflicted with the disease and, nearly thirty years later, is still the most accurate depiction of CF committed to celluloid. An underrated and under-praised piece of art, Alex: The Life of a Child is a frighteningly authentic and beautiful interpretation of the illness.

1. Foreverland (2011)

ForeverlandForeverland is a film that slipped beneath the radar a couple of years ago, but is perhaps the one film that will truly connect with its CF viewers. A line in the film, ‘it doesn’t matter if you live to be thirty or three-hundred, everybody thinks life is too short’ is, quite simply, genius. You did read that correctly. Genius. The pure force and meaning behind it is impeccable to the CF patient’s psyche. We know we’re living with Death on our shoulder, but doesn’t everybody?. The entire human race knows they’re going to die. No-one can predict it and we’re always stunned when it happens. This one line shows that whether it is CF, cancer or even the common cold, you will never be ‘different’.

The film follows Will Rankin (Max Thieriot) a CF sufferer on a journey to a healing shrine in Mexico. He embarks on a road trip with the sister of a late friend (Thomas Dekker) to scatter his ashes, stipulated in his will. The adventure oversees the blossoming relationship between the two companions, but also the decline in Will’s health as the task begins to takes its toll.

Also starring Juliette Lewis and the Oscar-nominated Demián Bichir, Foreverland is the most personal of the films on this list and the easiest for CF patients to relate to.

Question how long you have left? Will does this.

Your faith in medicine wavers? Will experiences this.

Up all night with coughing fits? Will has these.

Whatever we endure in life, Will demonstrates to magnificent effect. Yes, some liberties are taken and there are a few factual inaccuracies. But the awareness this film has, regarding the internal and external struggle of a young man with CF, is astonishing. This could only be done, one feels, because Max McGuire (director) is a long-term sufferer.

Foreverland is an incredibly intimate story that deserves the top-spot on this list. A parable of love and friendship; the story of someone ‘who spent his whole life preparing to die, and forgot how to live’.

In short, though cinema’s contribution to the cause is miniscule in the grand scheme, to dig long and hard enough is to find the remarkable, bizarre, glorious and gracious things about living with cystic fibrosis.

And to all those out there brave enough to battle it, I simply say: Always smiling; always breathing.

What do you think? Leave a comment.

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A self-proclaimed 'cinephile' who spends too much time obsessing over an out-of-control film collection, I am a lover of all things imaginative.

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40 Comments

  1. Susannah Sjöström
    0

    Very touching post. Didn’t know anything about this condition. Thank you for the awareness (and movie recommendations). And I hope your health remains good.

    • Dale Barham

      Thank you Susannah, my goal was to raise some awareness for the cause, I’m glad it’s reaching people all over.

  2. jayne b
    0

    So proud reading this, dale fills me with so much pride, how he handles his illness and now how he puts it into words with his excellent writing, keep it up dale xxxx 🙂

  3. Sian Adele
    0

    I hope everyone shares awareness of CF after reading this. Very emotional and a beautiful portrayal of the films throughout. You’re a fantastic writer and an inspiration, keep it up and keep smiling and breathing Dale.

  4. J. Bryan Jones

    There’s a lot of thought put into this one, and this article deserves a lot of respect. It made me think, and I’m glad to have fellow Artifice writers like you on board.

    • Dale Barham

      I really appreciate you comments J. I’ve felt welcomed to the site because of you and others. To be able to comfortably write about such a personal thing is really a reflection on the strength of this community. Thank you for reading and keep up the great work!

  5. Austin Bender

    Great article, just amazing. It’s difficult to write about personal struggles and still make it sound professional, but you did it. I must find and watch Foreverland.

    • Dale Barham

      Thanks Austin, I’ve loved reading your pieces since I started here. I just finished your Directorial Debuts one, loved the inclusion of Rian Johnson on there. Foreverland is a must. It’s in the same style as Little Miss Sunshine and Into the Wild, if you catch my drift. Thank you for commenting and supporting the article man!

      • Austin Bender

        Thank you, I’m glad you’ve enjoyed my articles so far. Rian Johnson’s Brick is a favorite of mine, Looper was really great too.

        Foreverland sounds really interesting.

        • Dale Barham

          Looper! Oh my days! What a monster of a film! I hold a slight grudge against the Academy for the snub it got in the Best Writing category. I might go and watch it right now actually!
          Cheers bud!

  6. Lovely post. I have a condition myself that I am not comfortable talking about but I am very pleased to read about how you are dealing with yours. If your goal was to get us interested, you got it. I’ll be watching one of these flicks.

    • Dale Barham

      Indeed that was my only goal. It’s CF week at the end of the month, and I wanted to do my part. Being able to marry two of the biggest influences in my life (film and my condition) in one article was something I couldn’t pass up and felt I could do justice to.

  7. Very well written piece, kept my interest right to the end. CF certainly needs to be better understood.

    • Dale Barham

      Thank you for reading Juzza. CF is something that is painfully overlooked in the public sphere, which is something I’m hoping to change in my lifetime, one tiny bit at a time!

  8. Beautiful article. Thank you.

    • Dale Barham

      Thank you Elisabeth. I’m just happy to be able to give the condition some awareness. You mentioned your friend suffers as well? I hope they’re feeling good, this thing can be hard sometimes but we all muddle through it the best way we can. Thank you for reading and commenting and good look with your writing!

  9. Taylor Ramsey

    Absolutely outstanding.
    A real thought provoking read, thank you.

    • Dale Barham

      Thank you for your comment Taylor. Obviously its very personal to me but I felt that it was an article I really needed to write. A labour of love if you will! I’m really glad you enjoyed it and I appreciate the praise, all I wanted was to raise awareness and using film was a fantastic way to do it.

  10. Jemma Baddock

    Wow, what a great story. The way your voice comes through as a writer has been really well executed. Who would have thought to ever write an article that incorporated CF and film/television. Truly inspiring!

    • Dale Barham

      Thank you Jemma. It was a bit like that scene in Jerry Maguire when he stays up all night writing the memo. I just felt like it had to be written! I really appreciate your comments and glad I’ve managed to reach such a wide audience already.

  11. It’s refreshing to see a well written article with such a personal touch, thanks for the read.

    • Dale Barham

      You’re welcome James, thank you for reading! Writing, obviously, is a big passion of mine so to be able to entertain and inform the Artifice community is such an incredible feeling! I appreciate you taking the time to have a look man!

  12. Camille Brouard

    This was great to read, a unique theme for a films-to-watch list and one clearly so important and personal to you. As somebody with fairly severe asthma I have an inkling of what it’s like to have breathing difficulties and feel confined by the body, but CF really is a hundred levels above that and I commend you for using it towards something positive like publishing this and making more people aware of CF and its impact upon those who have it. Thank you!

    • Dale Barham

      Like I said in the article, it doesn’t matter what people have to put up with in their life, we’re all in the same boat. I don’t rate my CF any worse or better than your asthma, what is important is that we don’t let these things drag us down. People like us and the rest of the Artifice community have the ability to spread awareness for any affliction, not just our own. It is with a great deal of pride that I read these comments and see my post on the front page, because I know that people are seeing it and becoming more aware.

      Thank you so much for your kind words and keep up the great work, Camille!

  13. Claire Macallister

    Wonderful ideas, and sensitively written. I watched Foreverland recently and completely agree with all that you’ve said about that film, which is heartbreaking and confronting in equal measure.

    • Dale Barham

      Thank you, Claire. I came across Foreverland by accident really, and didn’t know it was about CF when I started watching. It caught me off-guard to say the least and was a little too close to home in some places. A rare treat nonetheless.

      Thank you for reading and replying!

  14. Bill Balas
    0

    Very well-written review, Dale. I wrote ‘Pros & Cons’ for much the same reason you wrote this article. It’s a very personal story that reflects my own struggles with CF, and coming to terms with the lack of control I felt during my end-stage period of the illness.

    • Dale Barham

      You have no idea what a privilege it is to receive a reply from you, Bill. I honestly never expected you to read it and I did not know you struggled with CF as well. It seems obvious now though, all of the films in the article are produced in some way by a CF patient.

      You have done the cause and the illness so much good thanks to your film and I cannot express my gratitude to hear from you.

      Thank you for a very surprising piece of work and the wonderful representation of our struggle!

      I hope you remain in good health because cystics need people like you and the others on the list to give them a voice.
      Keep up the great work man!

  15. Colin Lloyd
    0

    Well done Dale for an intelligent and informative article,which hopefully will help give the readers an insight in to this awful condition.Personally I am so proud of the way you have handled this condition and how you have turned out.
    I am so very proud to call you my son and I hope you achieve everything you aspire to in a long and a healthy life. Always live in the belief that the cure is only round the corner.

    A proud Dad.

    • Dale Barham

      Thanks a lot for the comment, it means a lot. Obviously it was really difficult to convey everything without it seeming preachy or pretentious and the reaction on here I think shows that I did my condition and others like me justice.

      My fingers are always crossed for a cure, but I just take it a day at a time, living life to the full and making sure I have fun.

      Thanks again for the comment, your support means a lot to me.

  16. Great article, keep it up dude!

  17. Lynda Verdin
    0

    Well done dale

    I was very moved reading this article and how you cope with this terrible illness everyday.
    Stay strong live life. Keep up the good work dale you deserve it xx

    Love lynda & andy Ben Jordan & Tori

    • Dale Barham

      Thank you, Lynda! I’m glad that I can touch people with my article and that I’m raising awareness in the best way I can.
      Thank you for reading and your lovely comment!

  18. Amanda Gostomski

    Really want to watch the first two films on your list. Thank you!

  19. Great list with insightful thoughts, and thank you for top billing! 😉
    Max M.

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