Selma Blair’s first public appearance since being diagnosed with Multiple Sclerosis is prompting a discussion about disability visibility and inspiring people with MS, like designer Kirsty Stevens.
When I first saw pictures of Selma Blair walking the Vanity Fair Red Carpet at the Oscars using her cane, poised and elegant, I was in complete awe. I have never known of someone so newly diagnosed with Multiple Sclerosis (MS) fully embracing it and not letting it stop them from living their life so fabulously.
Selma’s appearance wasn’t just inspiring to me as a fellow “MSer”, but for the entire MS community. MS is rarely discussed openly, much like many other “invisible” diseases, and especially not at such a high profile event like the Oscars.
Selma has brought MS to the attention of the media and has successfully and positively raised MS awareness around the globe, and we can’t thank her enough.
I was diagnosed with MS when I had just turned 22 and was in my third year of a jewellery and metal design degree. Back then I was embarrassed and ashamed to tell people about my diagnosis. Looking back, I can see that this was firstly down to not knowing enough about the condition, even though around 100,000 people in the UK have MS.
I thought MS was something old people got, not young women. But since my diagnosis I’ve learned that MS affects three times as many women as it does men, and people are usually diagnosed in early 20s or 30s.
The other reason for my reluctance to talk about my diagnosis was that I didn’t want to make people feel awkward. Again, I think this was down to a lack of knowledge - there was basically no comfortable dialogue regarding invisible illnesses or disability at that time.
I took a year out of my jewellery design studies to come to terms with my diagnosis. It was the best thing I ever did, giving me the time to realise that just because I had been give this ‘chronically ill’ label, my life wasn’t going to instantly change. I also realised that living with MS was manageable.
So many people know someone with MS but it’s still misunderstood, so when I returned to university I decided to base my final year’s work on MS to raise awareness of the condition. Each piece I created represented what I had experienced living with this condition. The response was fantastic and allowed me to talk freely about my MS without any awkwardness. It was a real turning point for me and I was no longer ashamed about having MS.
I am now a self-employed designer with my own MS inspired surface pattern design label, Charcot. Using the MRI scans of my brain that were taken on the lead up to my diagnosis of MS in 2007, I take the nasty lesion shapes – the damage caused by MS – to design prints and patterns for screen prints, digital print and luxurious silk collections. It’s an innovative and creative way to make MS visible.
And it’s led me to so many exciting opportunities. I work closely with the MS Society and also with audiences that wouldn’t necessarily have a connection with MS – I have been to China to represent UNESCO Dundee City of Design at the first ever design week in Shenzhen.
One experience that made me relate so deeply with the bravery of Selma Blair walking the red carpet was attending the official opening of V&A Dundee, the first design museum in Scotland. I had previously been selected as their first design champion, which was an incredible honour.
On the opening night, the whole city was buzzing. It was an incredible evening, and I got to meet Japanese architect Kengo Kuma, the designer behind the V&A Dundee building.
But as the evening went on, the temperature in the room grew. Where this might be easily handled by most people, for me it caused an MS flare up – an extreme one of the type I had never experienced before. My legs lost all control – yes, I was in heels and had drunk one or two glasses of bubbly, but it felt like I was standing on marbles. My feet were wobbling all over the place and it took all my might to keep them as still as possible so that no one would notice. I had to hold on to a table to keep my balance, but the real difficulty came when I had to walk: I couldn’t. Well, not elegantly anyway.
That occasion was the first time in a long time that I felt embarrassed of my MS. What it shows is that there is still a way to go, we all need to talk about invisible illnesses more so the taboo and embarrassment around them is erased.
Selma Blair has started this movement with the loud and clear statement that her MS won’t stop her walking the red carpet, and by using a cane she’s shown that she is not ashamed of the visible signs of her condition. She’s continued throughout this week, talking openly about how she struggled to get a diagnosis by doctors who didn’t take her symptoms seriously and the relief of finally knowing why her body wasn’t doing what she wanted it to. It’s up to all of us now to continue the discussion.
Thank you Selma.
Images: Getty / Julie Howden