Living and Travelling with Cystic Fibrosis – Meet Emmah Money!

Hi there Travel Tarters out there in internet land.

Here’s a rather confronting question for you. If you knew exactly what your lifespan was going to be, how would you live your life?

Differently to how you live it now?

Well, I recently met one inspirational lady called Emmah Money who is faced with just that scenario. Imagine you’ve been told you have an incurable disease and that your likely lifespan is going to be 37 years of age.

That’s what happens when you’re diagnosed with cystic fibrosis – a genetic disease that causes persistent lung infections and gradually decreases your ability to breathe over time.

That kind of news would crush most people. But that hasn’t stopped Emmah from getting out there and experiencing all that life has to offer, which also includes a lot of great travel adventures!

I’ve talked about my confrontation with mortality before – it’s a subject very close to my heart, and it’s something that consciously and sub-consciously drives me to squeeze every last bit of fun out of life (hence my silly addiction for trying to travel around the world as much as possible!).

Being a cancer survivor forces you to change your mindset because I’ve realised that I could be taken from the planet at any minute, and that you have no control over when this might happen! I’m the luckiest man in the world and I’m so grateful for my second chance.

Emmah is devoting her life to raising funds and awareness of cystic fibrosis. She’s a motivational speaker, mother, and all round good person. I wanted to help her out here because it takes a lot of guts to do what she’s doing.

Anyway, have a look at this interview – and if you think you’re having a bad day – think again and read this!

You can also follow Emmah on Facebook and Instagram.

My interview about life with Cystic Fibrosis with Emmah Money – and how it shouldn’t stop what you want to do with your life

The Travel Tart: Hi Emmah, thanks for the chat. It was great meeting you recently in South Australia for some Shark Cage Diving. Anyway, tell me and the world a little bit about yourself.

Emmah Money: Likewise, 🙂 Well I am a mother, wife and a fighter of Cystic Fibrosis (CF). CF is a life threatening hereditary disease. It currently affects approx. 3000 Aussie’s.  And 1 in 4 are carriers of the CF Gene. Fortunately for me I don’t look like I have a disability, unfortunately though, it is not what it seems on the outside. I was given up for adoption at only a few weeks old, as when I was born the knowledge for treatment for CF was very little. My biological parents did the best thing for them and me. My parents, adoptive parents, two amazing people have set me an amazing foundation to go through life, with strength, passion and determination I have had many downs but many ups too. CF has a daily demand which consists of Inhaled treatment, physiotherapy, a cocktail of tablets and up to 30 pancreatic enzymes a day, this is just some of the behind the scene things to do when I’m healthy.

The Travel Tart: I think we both know that life can dish out some really crappy cards sometimes. I once heard a great quote – ‘Life doesn’t turn out as it should. It just turns out as it does.’ Life is really a mind game – how have you dealt with being handed the cystic fibrosis card and where has it taken your life?

Emmah Money: When I was younger, I was not able to understand what was going on, except it was my normality, frequent visits to the numerous doctors, weeks on end in hospital undergoing intravenous treatment and more. During my adolescent, it became an angry time – frustration and confusion. Trying to live “normal” but forever being interrupted by sickness, hospital admissions and then it affected my mental health. Don’t get me wrong I did have some awesome times as well, I got through a very hard time in my life, when I was about 15 after thinking that was it for me due to becoming very ill, to then having a 360 In my life and turning that year around.

I went on to travel the world, Europe, America, the local Australian Cities and of course the Asian countries too. I wrote my autobiography at just 16 which was published by Random House Australia – where I talk openly about finding my biological parents at just 15, after they thought I had passed away, to losing my many childhood friends, going through high school and of course living with an invisible disability.

In more recent years, I have had a quieter time as my little miracles happened- two beautiful babies. Something I never thought was possible as women with CF have a very high percentage of not being able to conceive naturally and men are infertile.

I am now back into Motivational Speaking, working on my second book and am the ambassador for Cure4CF Foundation, who support an Adelaide Research group who are years away from bringing their research to the human clinical trial phase – I am super excited to be on this journey. So between motherhood, my dreams and ambitions, my darling husband and just life in general…everyone has a story to be told, everyone has bad things happen, but its what you choose to do and how you deal with it that makes a difference. Life is too short so as the saying goes “Life is not measured by the amount of breaths we take, but the breaths that take our breath away”.

The Travel Tart: You’re quite open about how this is all affecting you emotionally – and that takes a lot of courage. When I felt like I was an emotional punching bag, I often turned to ‘black’ humor as a coping mechanism. How do you get through those really tough days?

Emmah Money: I only let people in so much…. A magician doesn’t give away his trick; I don’t give away my pain in depth. I think on those dark days now, I just honestly try and sift through the emotion and the feelings – sounds a bit crazy, but rather than avoiding it I have learnt to deal with it…so sometimes writing is very therapeutic for me…other times I just want to scream and shout with my loud RNB music going. Which I do…and other times its just okay to not be okay and have some down time. I hate not being in control…especially when I am sick…I very rarely get to that point, that scares me, so I don’t have time for down days…my parents have always taught me that there is always someone worse of in the world, so stop feeling sorry for yourself…this comes from my Dad who is a paraplegic, with 1 hip, 1 leg and no Kidneys!

Emmah with her dad!

The Travel Tart: One thing that we have in common is that we both have had lung function tests to see how things are going. I had mine during chemotherapy because one rather  unfortunate side effect of one of the drugs I was on (bleomycin) is death by lung fibrosis (yes, it’s ironic that the one thing that gives you a chance of staying alive has the potential to also kill you as well). I’m sure you’re completely over doing these tests alongside the regular treatments you have. Have you ever had one of those days where you thought ‘I’m sick of being sick, I don’t want to do this shit anymore?’

Emmah Money: Gosh – I did not know that about chemo – I definitely had a don’t want to do this shit anymore day recently. After being taken to hospital by ambulance because my body just shut down from pure exhaustion and just being over sick – I collapsed…this resulted in 3 weeks of an intravenous needle stuck in the side of my chest with medication on me 24.7. As I write this its been a week since the needle has been out and I still feel like it is in…I more so would go into panic attacks and want to just have my body all clean of medication, tubes and needles. My sick of it is when I just don’t want to spend my mornings doing treatment, but I know the effect if I don’t…I get sick of being sick. Coughing all the time and the rest that comes with it…so I try so hard to just do it and get on with it…

The Travel Tart: That is total crapola. I can’t even imagine what that’s like. Anyway, you’ve been trying to get Ellen De Generes’ attention – so much so, that you even brought a cut out face of her underwater for the shark dive! Have you had any luck in scoring a chat with her?

Emmah Money: Oh my poor Ellen De Generes campaign…I am so hoping she finds me! And sees me… I thought by unofficially taking her under the water to dive with the sharks would grab her attention… I faced my fears for Cystic Fibrosis – that being that having CF is not a reason to be afraid. And people with any disability should be FEARLESS.

I have set the challenge for Ellen to be FEARLESS4CF using my hash tag #CFMUMMY4ELLENDEGENERES. I want her to face her ULTIMATE fear what ever that maybe…skydiving…bunny jumping…what ever it is…but to then obviously have a coffee on that couch of hers and talk about CF to help raise awareness 🙂

Come on Ellen, get in touch with Emmah!

After all, there are many carriers out there…with little knowledge.

The Travel Tart: Don’t worry, I might be able to sweet talk her around… One thing that a life threatening illness definitely does do to someone is change their perspective on life. You have no idea how much stuff that comes across my brain gets dumped in the ‘trivial’ box these days. How has cystic fibrosis changed your view on the world?

Emmah Money: The world is your oyster, it really is..CF has made me appreciate what I have…not to take for granted that deep breath…I love being by the ocean where I can literally breath the salty air in… The world has many problems, I attended a leadership forum in Pittsburgh in 2012, where young leaders from around the world get to come together and discuss what is happening in the world, it was also an eye-opener to see the greater picture, the issues the world faces on a global perspective, I was fortunate to share my passion and talk about CF in the health session, one of my proudest moments as it was in front of Jamie Oliver, Sir Bob Geldof and a few other names! Here’s the link to the talk 😉

But life is really what you make it…not necessarily all going to happen at once, you have to have the bad times to have the good…but be a do-er not a say-er J

The Travel Tart: Let’s just say you can invite any 4 people in the world to dinner so you talk about raising awareness of cystic fibrosis (and possibly score a tonne of money to find a cure!). Who would they be, and why? I just need to know so I can contact/stalk them and ask them nicely to help you out!

Emmah Money: LOL – Well…

  • Sir Richard Branson – I think he would be valuable as a mentor but also able to help put my ideas and goals in to action on that next level of “making a difference”
    A business man with so much success – I’m sure we can learn a bit of each other
  • Ellen De Generes of course – to talk more about what her fear is and if she will face it and if she will, I will do it with her too – all in the spirit of raising awareness
  • Oprah – Who doesn’t want to meet Oprah? An amazing lady who came from nothing and made millions and helped millions…what a woman!
  • Jay Z – Naturally Beyoncé would have to come, what a power man…I love music…RNB specifically…Id love a RNB style song about CF made…me featuring in his film clip along side Beyoncé…not me singing…but raise awareness through this power couple! 🙂

The Travel Tart: My mantra is that a bad experience only becomes a negative one if you don’t learn from it. What’s your best piece of advice to others who are going through cystic fibrosis at the moment?

Emmah Money: Don’t let CF Define you…yes there will be bad days so on those days, listen to your body…rest…do your treatment…rest. A few extra days of allowing your body to recover, will make a world of difference. Trust me.

The Travel Tart: Thanks so much for the opportunity to interview you – it’s been a real pleasure.I wish you nothing but the greatest success for your endeavours!

Just remember this quote which is on Emmah’s website: “My life isn’t easy, but I make the most of everyday and want to encourage others to dream like they have no limits and reach for the stars. I would rather have a list of to do’s than a list of ‘impossibles’.

More about cystic Fibrosis below:

About Anthony The Travel Tart

The Travel Tart writes about the funny, offbeat and weird aspects of world travel today. Travel wasn't meant to be taken too seriously! Check out ways to say hi below or sign up for his silly newsletter!

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2 Comments

  1. John John
    March 9, 2017    

    Great interview – Emmah is an inspiring woman!

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