Archives: Public Speaking

If you follow me on Twitter, you can’t have helped but notice that it’s been a very busy week, with no less than five pieces of media telling my story during transplant week. (Links to follow).

Transplant week is always a special week for me, for very obvious reasons. It’s a chance to harp on about the miracle of organ donation and for me to tell my story to inspire people to have difficult conversations with their family and sign the Organ Donor Register to record their wishes.

It’s also a challenging week. It forces my life into a spotlight, not just in the media, but in my own head as well.

Talking about the difference between pre- to post-transplant me shows just how far I’ve come, but also challenges my perception of my life and what I’ve achieved. It challenges my understanding of the world I live in and it challenges the decisions I’ve made in the years since my transplant.

And here’s what it all comes down to:

I feel a pressure to “succeed” and make a difference that my donor would be proud of.

The funny thing is that I know this is silly. I know there’s no reason for me to feel this way, or for it to leave me feeling inadequate if I haven’t achieved what I feel is “success”. Yet it’s a feeling I can’t shake.

As one very good friend said to me during the week when I voiced this to her, “Your donor will just be happy they’ve allowed you to still be here, regardless of what you’re doing and how successful you are.”

The problem I face is that I don’t know that for sure. Yes, it makes sense. Yes, I can see the logic. But I’ve never met and will never be able to meet my donor, so I don’t know what they think.

That’s why I’ve been so busy this week. That’s why I remain so willing to talk so openly about my transplant journey. That’s why I’ll always take advantage of transplant week. Because it’s the one chance I get to demonstrate just how much this all means to me.

To that end, I’ll be sharing links to the various media hits I had this week here on the blog in the next few days. If you’ve heard them already, thanks for listening. If not, perhaps download them and have a listen in the car or when you’re out for a walk. The two radio interviews are the most in-depth I’ve ever done and in both of them I share some thoughts and stories I’ve never shared publicly before.

And, of course, if you haven’t already, please sign the Organ Donor Register.

This week is National Organ Donor week, or Transplant Week if you’d rather the shorter version.

It’s a massive week for me, a chance to talk about the thing that I am most passionate about and, hopefully, to inspire people to sign the Organ Donor Register.

It’s only Monday morning, but already I’ve had three pieces go out: a short news piece on BBC Radio Northampton, a 3-minute news piece on ITV Anglia and a 15-minute chat on BBC Three Counties Radio yesterday morning.

Whenever I speak about cystic fibrosis or organ donation I know people listen. I’m blessed with both a compelling story and the means to express it. I’m not very good at identifying my own strengths, but I know communication is definitely one of them.

However well I speak or write, though, I know that most of my friends have heard this stuff a million times. Most people I’m connected to on Facebook have been with me throughout my whole journey and know exactly how I feel.

Despite this saturation, and to my surprise, they are still listening to everything I share. I’ve had more engagement on Twitter and Facebook in the last 24-48 hours than I’ve had for the last couple of weeks combined.

Why? Because I’m speaking with passion.

To listen to someone speaking with passion is to hear their words pour from their heart like a dam bursting to give way to the floods behind it. Regardless of whether you agree, more often than not you’ll listen to their arguments because of the force of feeling behind them.

Passion is honest. It’s almost impossible to fake passion, which is why politicians so frequently fall foul of the trap; they try so hard to sound passionate, but the effort always shows and comes across as a lack of sincerity at best, straight-up emotional manipulation at worst.

There is a rawness, a freshness, an authenticity to someone who speaks with passion that can’t be bought or faked. It’s naturally compelling and our ears tune into it without any conscious thought on our part.

I don’t like to bombard people with calls-to-action to sign the Organ Donor Register and talk to their family about their potential death. I recognise that it’s not a subject people much want to discuss. But weeks like this give me a chance to speak with passion about the thing I care most deeply about. So I’m grabbing this opportunity with both hands and I’ll be shouting from the rooftops all week.

You can help by simply sharing this post, or the organ donation link, with your friends so they understand just how important it is for us to stop three people every day dying while they wait for a transplant that doesn’t come in time.

(By the way, have you signed the Organ Donor Register? Do it now!)

Last week I wandered down to London to be part of a Parliamentary reception for the CF Trust as part of their CF week celebrations/promotional push. I’m always happy to speak for the Trust because I believe 100% in what they’re doing and hope that, in some small way, my contribution helps to persuade others how valuable their work is.

The CF Trust published this lovely 5 minute video of the event on their website last week, so do take a look. The full text of my speech is below the video. I’d love it if you wanted to connect with me on Twitter or Google+ and let me know what you think.

Hello. I just have to say I love the layout of this event; because you’re all already standing it means I get an automatic standing ovation.

I’m here to give you a personal perspective on CF and transplantation. I was diagnosed with CF at 18 months of age and five and a half years ago, at 25, I received a life-saving double-lung transplant.

It’s far harder for me to convey the horrors of CF than if you were hearing from someone currently enduring them. I used to turn up to speeches dragging an oxygen cylinder and looking like death and tell people it’s rubbish and they would instantly agree. Now it takes a little more nuance.

So, I could stand here and tell you all about a life with CF. I could tell you about the endless rounds of physio, the mountains of medication, the time-sapping regimes of nebulisers and the moral-sapping stays in hospital every few months. I could talk to you about the fear that comes with waking up in the morning and not being able to take a proper breath in.

Or, I could talk about the difference transplant has made to my life – about being able to walk or run up a flight of stairs without stopping halfway for a five minute break to get my breath back. I could talk about how I’ve seen my the 30th birthday no one expected me to see or my wedding day almost a year ago to the day. Or I could talk to you about how it feels to be able to play football with my Godson, to chase my niece or to lift my nephew up for a cuddle.

These are all things I could tell you about, if I had the time.

Instead, let me put this to you: imagine, for a moment, you suffered from a disease where you knew that transplant was your last – and only – option. Imagine being forced to communicate with friends solely through the internet because you can’t be in the same room. Imagine the isolation and the fear and then imagine seeing your friends, slowly but surely, die from the very same thing that is destined to kill you.

That is the reality of a life on the transplant list; it’s a life on pause. That is the reality of day-to-day life with CF: no let-up, no respite, no days off. Just 24/7/365 fear, pain and often despair, mixed with hope, belief and often, a bit of a giggle – we’re known for our dark senses of humour.

Here’s the thing: this is something that we can do something about. If we can increase the number of potential donors in the UK, if we can increase the number of pairs of lungs made viable for transplant, if we better support the teams involved in performing the myriad complex duties of making a transplant happen, we can stop people with CF – my friends – from dying while they wait.

When I was listed for transplant, the stats said I had a 50/50 chance of actually receiving one. With a life-expectancy of less than two years, I lived for two and a half years filled with fear and hope. It’s fantastic to see that people with CF now face 70/30 odds, but they’re not much better than a coin toss.

The real reason I’m here today isn’t to talk about me and my life, but to talk about that 30%. That statistic that represents not just numbers on a list, but real people, real friends of mine and real family of many. That 30% represents people that we can – and we must – do better by. Because their lives are within our power – your power – to save. Thank you.

Even after my apologetic post last week, I was unable to return to the flow of posting daily.

Instead, I’ve been having something of a break to focus on developing other things, including a programme of motivational speeches and presentations to help re-engergise and re-focus businesses, upping my programme at the gym in preparation for the 3 Peaks Challenge and working towards the launch of my new website theindiefilmhub.com – a content curation site for independent filmmakers, now just 5 days away from launch.

Although I’ve previously suggested that breaking your routine in blogging – whether about your film, your business or your personal life – can be punished with a significant drop in your readership, sometimes it’s good to take a break for a while.

Taking a break doesn’t have to mean not doing anything at all1, it’s simply about re-focusing, allowing yourself to be immersed in a different project, a different goal or even a different world.

The old cliché goes that a change is as good as a rest. Remember, clichés are generally only clichés because they’re true.

1. although we all know the times when that’s precisely what we need! [↩]

Last night I was invited to K’s uncle’s Rotary Club meeting to give an after dinner speech about Cystic Fibrosis and transplant/organ donation1.

I have to confess I’ve been so swept up in work the last couple of weeks I hadn’t actually taken any time to prepare what I was going to say. It’s not difficult to tell my story off-the-cuff, but I usually like to have a rough game plan.

What I love about being unprepared, though, is what crops up from the proverbial blue when I’m winging it.

Last night I found myself saying this:

We all learn very early on that life’s not fair.

It’s not fair that anyone should have to go through what I’ve been through; it’s not fair for a 28-year-old to have been to as many friends’ funerals as I have; it’s not fair that a friend of mine has waited 2 years longer than I did for a transplant that still hasn’t come and is on the verge of giving up altogether.

By signing the Organ Donor Register you may not feel like you’ve done very much, but you will have taken a very, very small but very, very important step towards making life that little bit fairer for the people who are waiting [for transplants] and the families who love them, support them and don’t want to lose them when there’s a simple solution.

There’s an old army adage known as the 6 P’s that tells us “Proper Preparation Prevents P*** Poor Performance”. Yet sometimes – just sometimes – lack of preparation can lead to inspiration, to creativity and to an outcome you’d not considered.

I spoke at the Rotary Club of Harrow because I wanted to help spread the word about how life-transforming organ donation and transplantation can be. I walked away with several pledges to sign up and nearly £300 in donations for the Cystic Fibrosis Trust. Sometimes lack of preparation pays off.

(Now, if you haven’t already, go here and sign the Organ Donor Register!)

1. most of you will be familiar with my own transplant story from my SmileThroughIt journal [↩]