Recently there has been a lot of stuff in the press regarding Multiple Sclerosis. Sadly, it seems to take a celebrity getting the disease – Jack Osbourne – before many people are even aware of such a thing. However, I have been aware of MS for quite a long time. Firstly because when my family and I moved into our village home, the wife of the couple we bought it from had MS and had done for the past 30 years or so. She was one of the most remarkable women I had ever met – serene, kind and never once did she complain. We all complain about the most trivial of things, but the fact that slowly but surely she was losing use of her left arm (as well as already being confined to a wheelchair) never came up in conversation. She always looked beautiful and always asked how you were.
MS is an incurable neurological condition that damages the nerves and affects the transfer of messages around the body. It can have a wide range of symptoms, including tiredness, temporary blindness, loss of co-ordination and speech difficulties. It is unpredictable and affects everyone differently. One in five sufferers has a benign form with mild attacks and no permanent disability, while another 15% have a progressive disease that steadily worsens. Jack Osbourne was diagnosed with the condition after he lost 60% vision in his right eye.
The other person that we knew who had been diagnosed with MS was, again, another wonderful woman called Shana. I first met Shana when my family had just moved from London to Brighton and I started having piano lessons. She was extremely talented and had moved to the seaside to start up a Talent Agency for kids called Shana Goldman’s. As it so often does, life flew by and a freak twisted ankle on the very first day of Shana walking to my house to give me a piano lesson turned into something which was finally diagnosed as MS. It took years and years and a lot of unexplained pain and discomfort to finally establish what it was Shana had, and through all of that we lost contact for a couple of years. The next time I saw her was from a slight distance in the middle of bustling Brighton city centre, and she was on a mobility scooter. Something I only associated with old people, as terrible as that sounds.
I emailed Shana, remembering the wonderful, ever-smiling lady that she was and was completely shocked when I heard that she had MS. She explained how she was diagnosed with Intermittent Relapsing Multiple Sclerosis and believes she had it for at least 14 years at the time of emailing. She was so cheery and upbeat, I couldn’t really believe it. I suppose, stupidly, I was expecting a sad, perhaps even bitter email (“why me?”) – possibly because that’s how I would feel. Shana was in her 20s when she was diagnosed – full of ambition and drive – not someone that should have been struck down with this condition. She told me how she was really busy: giving a talk to The Department of Health in Whitehall, regularly going up to Parliament and giving talks ranging from social care reform to ways of getting new medication funded. She was even planning to write a children’s book. The scooter was also explained: “After years of struggling to walk and not being able to even walk to the local shops, it was just such a relief to finally realise I was disabled and do something about it.”
I was in awe. And continue to be in awe every single time I sign into my Facebook. There, popping up on my news feed is a little ray of light in a few hundred words. Such positivity and enthusiasm and hilarious one-liners the whole time! MS? Debilitating? Yes, of course at times Shana has bad days and weeks and can’t get out of bed, but that hasn’t dampened her spirit. She is always campaigning for better awareness about MS and better treatment for those who suffer and it sounds like she is constantly busy and – most of the time – having a ball doing it! I can’t imagine having MS, but I also know that if I ever did find myself in that situation, I wouldn’t find a better supporter and friend than Shana. I know that Shana will have bad days, but I also know that she hasn’t let MS ruin her life. In fact, I don’t know many people with such a busy social life as Shana!! It’s truly humbling and inspiring. So, Jack Osbourne, if you’re ever worried, give her a call.