Known for her vivacious spirit and scene-stealing roles in films like “Cruel Intentions” and “Legally Blonde, ” actress Selma Blair has captivated audiences for years. But in 2018, she revealed a different side of her life, sharing her diagnosis with Multiple Sclerosis (MS).
Tell us a little bit about yourself, your health journey, and your diagnosis.
I was diagnosed with MS six years ago. I am also the mother of a twelve-year-old boy and I live with his life and future as my North Star, so living with MS for me takes more planning and rest than I care to explain. I try to stay indoors on hot, sunny days as it increases autoimmune inflammation. It took a bone marrow transplant to stop a years-long flare. For me, the diagnosis was much appreciated as it helped me understand what was happening to me.
Disease lassitude feels like clinical depression except I didn’t feel grief, just a constant slipping into sleep. When I get exhausted, I often walk like the hunchback of Notre Dame. It still happens in transitions between walking from one room to the next in my home, or even from sitting to walking.
Proprioception issues may be common, but the dystonia along with confusion about where I am placing my legs and arms, looks a bit much! I have to admit. I try to slow down and organize when I remember. But after years of this intermittent movement and speech disorder from dystonia, along with a drop foot, and the extreme fatigue and sometimes weakness, I have come to understand it is real and engraved in my nervous system. But there is an easier transition now than at diagnosis.
I say this here because it was something I thought might be psychosomatic. And I tortured myself about not having the ability to organize my actions enough to be able to take a single step or have a clear word come out of my mouth in a casual or timely manner.
What’s the biggest misconception about MS?
I think a misconception about MS is that it just steadily progresses and gets worse in a linear way. I have relapse remitting MS. So it took breaks from being active in my past. But now, I have no evidence of disease activity. Yet I still have symptoms. They accrue in time or with heavy flares. So there is some damage that accounts for the glitches in my neurology. And it’s fine. It has not worsened in four years.
There are new disease modifiers. That’s great. Trying them is not great while desperately trying to put out a flare. And everyone has different symptoms. Most people have the unifying fact of a drop leg in the weaker side (common) and fatigue that saps the joy. I find that water helps. And naps are non-negotiable for me. I have been told that people die with MS but not from MS.And while I sometimes use a cane for balance, people sometimes assume I can’t get around. But I can. I know it looks and feels really messy. One misconception is that someone isn’t necessarily lying if their symptoms don’t present the way someone says they should. As I mentioned, everyone has different symptoms.
What advice would you give to others who have recently been diagnosed with MS or who havea loved one who has been recently diagnosed?
A diagnosis of MS can be overwhelming of course. But chances are, so many have had the neurological symptoms for a while. For me, knowing the possibilities of recovery and being able to heal has been incredibly reassuring. But at the same time, living my days while getting second and third opinions during a flare was not sustainable. I did need help with driving, and the kiddo!
I felt an urgency to get better and it has taken much longer than I thought it would. Not just a year, like a specialist had once told me during my second year battling MS. It has taken years to get my balance back.
Don’t be surprised when the day must come to a close by 5 pm for you, or your loved ones, when living with MS. While they may seem back to vitality but then it comes back again. The nerve of that MS!
