Secrets, Celebrity and Song; Part 1 of the untold story behind #fightipf
So there’s Jackie and I, tears flowing in the main hall of the Royal College of Surgeons in London, watching our grandkids making a music video with Myleene Klass at the piano. There’s also a Hollywood style film crew recording every second for a video promoting Global IPF Awareness Week. How the hell did all that happen?
Truth is I’m still not entirely sure but here’s the story of an unforgettable few days and real glimmer of hope in our quest to spread awareness of this awful disease.
It can’t have been more than a month or so before it actually happened that I had a call from Action for Pulmonary Fibrosis, who were working with Roche on a big awareness-raising campaign for IPF Week. APF were putting together a group of patients willing to take part. Would I like to be involved? The criteria were unusual in that you had to have IPF, be able to drop everything for a weekend, be happy to take singing lessons, have grandkids between 11 and 17 and be available to film an interview at home for a day the following week.
It all seemed a bit rushed to be honest but sure enough confirmation came through and the now familiar mixed emotions started to show themselves; yes it’s a great thing, but it’s going to be tiring and a full-on job for Jackie. Luckily my son Matt and Charlotte were going with the grandkids so that would prove a help.
When the day came it was clear that we were going to be very well looked after and that a great deal of thought had gone into all aspects of the preparation. As always I order my cylinders a few days beforehand and I was pleased to be offered liquid oxygen this time. I use it at home but I’ve never asked about a three day trip before.
Liquid oxygen meets my needs best now because it lasts far longer than portable cylinders. My usage is still high because I refuse to concede that it has no effect any more on my breathlessness. I’m sure it helps a bit when on high, so as long as I’m allowed, I’ll keep using it.
Once we’d settled ourself in we took a trip to the bar for an hour before dinner. The foyer and bar area was marble clad, expansive and well lit, as befits a four-star establishment. The staff were brilliantly attentive and efficient and even the guests seemed uncommonly welcoming and happy to engage in eye contact at every opportunity. I was reminded of a brief trip in the car once when our grandkids were in arms; it was just a half mile drive in an area we’d lived all our married life, but one of those times where almost everyone we passed seemed to know us and waved enthusiastically in our direction.
The same thing was happening here and I figured that maybe my work as an ambassador for Action for Pulmonary Fibrosis was doing unsuspecting things to my level of celebrity? As is often the case it had nothing to do with my personal standing but everything to do with the fact I was wearing a canula in a bar full of IPF related people looking to introduce themselves to whoever else might be involved in the project.
Similarly, on arriving home that day several years ago we discovered that our sudden popularity was due to nothing more than a three foot hight purple monkey being left on top of the car. It had a hand caught in a back door and would have looked like it was hanging on to the roof for dear life!
We travelled to London from our home in Leeds on Friday and on arrival the grandkids were soon whisked off to rehearsals leaving Jackie and I free all day. We were just over the road from the British Museum so it seemed rude not to nip in and marvel at all the artefacts our nation ‘borrowed’ on it’s imperial travels. Saturday saw the girls off to rehearsals in the morning and in the afternoon we grown-ups went for our coaching session.
Sunday was to be the big day in that we were to attend a performance at The Royal College of Surgeons and we were told to expect a surprise. When this was confirmed in a briefing session and we were asked if we had any questions, I couldn’t help but enquire if we could conclude; given the surgical connection of venue and our illness, whether the surprise was in fact a lung transplant each? This drew a pleasing response that was instantly upstaged by the splendid line from another IPF patient: ‘I’m not having your bloody lungs!’
Even though music is hugely important to me, I’ve never actually sung since being in a church choir as a kid. I’ve had the chance to do backing vocals in a variety of bands over the years but always lacked the confidence. I now understand why; I was always singing by myself. There were twelve of us in the coaching session, all at wildly differing levels of ability but all enjoying singing scales via the medium of songs with silly lyrics. It’s fun but more importantly its very good exercise for the lungs.
Having a string of notes to hit and a crowd giving it their best shot gives a great safety-net of sound which allowed me to fumble quietly until I got the key, and then I was off; singing with the best of ’em! Thoroughly enjoyable and a highly recommended hobby. As long as everyone was singing, I was fine, and that’s good enough for me, so we’re now looking to join a local choir!
And so to the main event; we were told to expect quite a wait as the technical team would be setting up for ages. As we walked in you became aware of the grandeur surrounding the college; it’s history and the esteem within which it’s hierarchy are held. Without being sure, it’s purpose appears educational, symbolic and administrative, apart from today.
Entering the main hall we are gently absorbed into a well ordered working environment offering the various stages of preparation necessary to create a Hollywood film, never mind a short video. Why do I say that? Well, there was a full briefing, make-up, five large movie cameras on big tripods, massively powerful lights all over the place, the crew all dressed in black and able to communicate silently without electronic aids, a very large and impressive grand piano and catering to die for!
After a couple of hours of further bonding with fellow sufferers it became clear that the climax of the weekend was close. We were ushered to our seats and witnessed the technical crew survive a couple of long drawn out equipment malfunctions which seemed to be resolved by either kicking the connection or turning it off and on again. Either way the stage, literally, was set.
I’m writing this before seeing the end result and I honestly cant remember who came out first but I suspect it was the exceedingly confident, pretty and perfectly preened Myleene Klass. If so, then our dear offspring weren’t far behind, but either way it was certainly a team event.
What I haven’t mentioned is that when the grown-ups were being coached we tried a chorus from a song that few of us had heard, but was really quite inspirational. (I’m not telling you, you’ll have to find the video!) It seemed stirring and appropriate and I sensed that it may feature again.
I think there were three takes in total but there could only be one. The first caught the wonder and surprise on the faces of us all as we heard the full song for the first time, sung so delightfully by those we adore. The lyrics took on a real meaning and somehow coming from our own second generation offspring, it added a certain something you just can’t get from anywhere else. It was powerful in the extreme, everyone was in tears.
To her credit Myleene, who accompanied on piano, was visibly moved by the whole thing and mingled with us for some time. She was particularly taken with the kids and spent ages playing piano with them and generally messing about, which they loved.
After maybe half an hour it became clear that the production bosses were happy as the crew started packing up and I remember standing alone in this busy hive of activity wondering quite what may come of it all? What had just happened was a long way from any awareness raising activity I’ve been involved with and in the right hands it could prove very powerful indeed. The organisers had brought patients and their families from Canada and Belgium to give this a global feel and the word is that the resulting film will be used worldwide.
At the time of writing we haven’t seen anything of the output so have no idea how this, or footage from the home interview ended up looking. We learned that despite being host to a film crew for some five hours the following Thursday, only around thirty seconds would used. I’m intrigued as to what survives the cutting room floor, I’ll report back and have a giggle at the bits they dropped!
Awareness week is upon us and Action for Pulmonary Fibrosis are all over it. I have agreed to make myself available should there be any media interest. There are no guarantees but it could range from national TV to an interview in the local newspaper. Fingers crossed.
So, I’ll be back.
As we say here in Movieland.