It’s been a really strange day today, giving me a surreal, 3rd-person insight into how my life has changed in the last 13 months.
I was out for the day filming with Emily for the Live Life Then Give Life website – part of our new media project to add even more impact to our life stories by getting the people in question on film.
First port of call was our fabulous advocate (or Fabocate, if you will) Jess, who has been waiting nearly 3-and-a-half years for a double-lung transplant and is now way beyond the “worrying” stage of the wait and headed rapidly downhill. Sitting an interviewing her at her home in Kent, I remember how similar I was last year just weeks before my call – I couldn’t really move around, everything was a struggle and, mentally, I was right on the verge of giving it all up.
She also made me realise, however, just why people find people with CF so inspiring. As I sat and watched her making light of her situation while pausing for enormous, breath-stealing coughing fits, I saw in her something which I suppose many people once saw in me – a determination not to be beaten by something we’d battled for years. More than that, though, I sat there and wondered to myself how on earth I did it.
At the time, you don’t really have a choice, you just get on with it, but looking at it from the outside yesterday I could see just how much hard work it is to stay alive and keep fighting and I was blown away by Jess’s willpower. She’s a phenomenal girl and I hope and pray that she gets the call she so desperately needs now.
By way of total contrast, we left Jess in the mid-afternoon and traveled to Epsom in Surrey to talk to another one of our advocates, Lisa, who is celebrating, like Emily and I, her second Christmas post-transplant. In fact, Lisa, Emily and I were all transplanted in 2007, spreading ourselves through the year – Emily first, in January, Lisa later on and then I brought up the rear in November.
Talking to Lisa I was given chance to reflect on the changes that happen between the state we were all in pre-transplant and the freedom and joy we all feel now it’s behind us. We’re all incredibly lucky people, but it made me realised even more strongly than usual just why we all work so hard to raise the profile of organ donation – this life we’re living now is amazing, remarkable and truly miraculous, but we still lose over a 1000 people who need a transplant every year. That’s more than 10% of the people who are on the waiting list.
It doesn’t have to be like that – we can all help to change it by talking to our loved ones about our wishes and making them talk to their friends and their families and to let everyone know that giving someone the gift of life when you no longer have yours is the greatest thing anyone can do for another human being.
Sign up. And Talk.