“Yesterday I was filmed for a promotional documentary about MS. Exhausting but fun #LiveLifeNotMS”
I posted the above on my social networks and never have I been more filled with a sense of pride and purpose for being an MSer. It was being shot as a promotional film for a drug company involved in MS research, and that was why I was going to be part of it.
The isolation of MS
The campaign depicted MSers being trapped inside a bubble, living with the restrictions of the illness. For my part, I was to stand in front of my kitchen window, inside an MS bubble that isolates me from the outside world.
But because there are now options and treatments available for people with MS, the aim of the film was to allow me to burst the bubble and finally to get on with life.
Ready for my close-up
The film had been in the making since just before lockdown and finally I was going to be ready for my close-up.
Masked up, the director and cameraman arrived. As the plethora of camera equipment – a mindboggling amount of photographic and audio kit - was unpacked in the garden, the director talked me through my part in the process, aka the shoot.
As it happened it was an uncomplicated process. I was instructed to stand behind the sink – or should that be prop myself up against it – and pretend to wash a couple of soapy mugs while looking serenely through the window at anything except the camera. Then the whole process was repeated from inside for different angle shots while trying my darndest not to buckle at the knees.
Finally, after a camera shot of me walking away from the sink with my stick, some scripted voiceover audio was recorded, and my 15 minutes was up. I imagine once the MS bubble special effect is magicked into the film, then I would be happy to have contributed to something that I had already figured out for myself.
Bursting the MS bubble
My life is a hashtag that demands that I live life not MS. Not the other way round. At the age of 60 I wasted what feels like a lifetime inside a bubble of my own making. I burst it only a couple of years ago when I worked it out that it really was better to live life and not MS which was why I was happy to be in the film. The satisfaction I got from filming something that I believe in has been a privilege.
The finished film with other MSers in other bubble sequences in other situations with other MSers, will, I believe, make for a very positive message for the 2.3 million people living with multiple sclerosis worldwide. And isn’t that worth bursting a few bubbles in celebration?
Martin is an MS blogger and influencer. You can read more of his blogs at martinbaum.co.uk.