It took me a minute to realize what actor Selma Blair was clutching on the Oscars red carpet. When I finally recognized it was a cane, I couldn’t help but think, “What a badass.” The fatigue that comes with a diagnosis of multiple sclerosis (MS), which she was diagnosed with in August 2018, is no joke.
I know because I have it, too.
I was diagnosed with MS just before my 21st birthday but like Blair, my symptoms had begun years before. I was 18 when I first noticed something was wrong, but at first, no one could tell me what was going on. My fatigue would be chalked up to adjusting to college life; the numbness in my arm to a pinched nerve; my migraines to “that time of the month;” and my dizziness to a slight bit of vertigo. It wasn’t until I temporarily, but painfully, lost sight in my left eye at 20 that an ophthalmologist sent me to the MS clinic at the Ottawa Hospital for a consultation. One MRI showing lesions on my brain and one spinal tap showing certain elevated proteins later, I was finally given a name for my cluster of symptoms: relapsing-remitting MS (RRMS).
What is multiple sclerosis?
MS is the most common neurological disease affecting young people. Canada has one of the highest rates of MS in the world, beaten only by the U.S. (where upwards of 1 million people currently live with the disease), Germany, Norway and Hungary. There’s a lot we don’t know about MS, including why it happens, why it’s more common in women than men, why you’re less likely to get it if you live closer to the equator and—this is a big one—how to cure it.
What we do know: Most people are diagnosed between the ages of 20 and 50. There are four types of MS that differ in severity and symptoms, but in each one, your immune system attacks your central nervous system, leading to symptoms such as balance issues and dizziness, fatigue, numbness, tingling, gait issues, trouble swallowing, pain, weakness, and cognitive troubles. It’s really difficult to even get a diagnosis because MS symptoms mimic those of other ailments, including Lyme disease and Lupus. Also? This disease is unpredictable.
In the seven years since my diagnosis, I only remember ever hearing about two celebrities who also have MS: Jamie-Lynn Sigler of The Sopranos and talk show host Montel Williams. But if I hadn’t gone looking for that information, I never would have known. That’s why seeing a high-profile celebrity like Blair show up to Hollywood’s biggest night in the midst of a flare-up, complete with a cane and shaky voice (thanks to a bout of spasmodic dysphonia), was something incredibly powerful. And not just for the MS community—that night at the Oscars, people with all sorts of disabilities saw themselves represented in a space where we are usually invisible.
I hope the reaction to Selma Blair’s MS signals a shift in the way we talk about illness
And we’re also seeing ourselves in what feels like a new type of conversation around illness and disability. When celebrities have talked about their chronic illnesses in the past, their stories have often been reported with an air of condescension and pity. It was as if the diagnosis, no matter was it was, was a death sentence—even though in many circumstances it wasn’t.
Take Michael J. Fox, for instance. When he announced his Parkinson’s diagnosis via People magazine in 1998, the cover was emblazoned with the words, “The Fight of His Life.” While the title doesn’t say he’s fighting for his life, the wording was still sensational—especially since readers who weren’t familiar with the disease wouldn’t know that you can’t die from Parkinson’s. What’s more, it characterized Fox as some sort of tragic figure, which People‘s art treatment only encouraged. The cover photo looked as if it would be used at his memorial or, worse yet, as if they were announcing his death. The story just didn’t come across as dignified.
For the most part, Blair’s story has been covered in a more respectful way. ABC News’ Robin Roberts remained fairly neutral during their recent sit-down interview and, more importantly, allowed Blair to control her narrative. That was important, because the only person who can tell Blair’s story is Blair. But maybe it took someone like Roberts, who was diagnosed with breast cancer in 2007, to understand that.
Of course, any increased awareness around MS is a good thing. “Anytime we learn more about MS from someone with a public voice like Selma Blair, it builds more awareness for the disease,” says Dr. Karen Lee, vice president of research and managing director of the MS Society of Canada. “MS is a disease that affects people very differently. So [when] we build awareness and talk about the types of symptoms people may have, that brings us and the community together in terms of understanding what MS is.”
But there’s a particular benefit to nuanced, respectful storytelling. I’m happy to see Blair be so public with her MS—especially when she’s doing so in heels and a blinged-out cane. Her positivity and humour is shining through and I think her approach is allowing people to see another (dare I say younger?) side to disabilities.
Selma Blair’s MS journey may not be mine—but she’s still inspiring
Back in October, I saw Blair’s initial Instagram post about her diagnosis and I thought I had an idea of what she was going through. She said, “I am disabled. I fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken gps… I have had symptoms for years but was never taken seriously until I fell down in front of [Jason Berkley, a neurologist at Cedars-Sinai Medical Centre in Los Angeles, and big brother to Blair’s friend, the actor Elizabeth Berkeley] trying to sort out what I thought was a pinched nerve. I have probably had this incurable disease for 15 years at least.”
Yes, I fall and yes, I drop things, and I even forget and trip over my words daily… And if you ask me to do up a button, you’re going to have to give me a minute. Last year, I experienced one of the worst flare-ups I’ve ever had. I was numb in about 75 per cent of my body, I lost vision in eye, my balance was way off, I had muscle spasms and weakness, gait issues, swallowing difficulties and exacerbated fatigue. It lasted for six months.
So, I’m not going to lie, seeing Blair needing a cane to walk and hearing her shaky voice rattled me. I reminded myself that no two cases are alike, but I couldn’t help but see my possible future in her. Despite what I was going through, my symptoms are not considered as aggressive as Blair, who has a more progressive form of the disease. RRMS is considered the least aggressive, but the most prevalent. While I’m not expected to end up with severe mobility issues, eight out of 10 people with RRMS develop Secondary-Progressive MS, which the Multiple Sclerosis Society of Canada describes as, the “phase of the disease [with] progressive worsening and fewer relapses.” So, really this disease can change at any moment. It’s that unknown that’s the scariest for me, and Blair has been a reminder of that.
Over the years, I’ve come to accept my MS and everything that comes with it. But it wasn’t easy. Maybe if I had someone I could relate to during the early years of my journey—a young, vibrant career-driven woman, like Blair—the fight would have seemed a little less lonely. But I hope her story helps the next batch of young women diagnosed with MS, or any other disease or disability. And I hope it encourages more people to understand what we’re all going through.