That thing you didn’t know about. It had been there all along. The pieces started falling into place. I’d suffered from symptoms that would come and go ever since childhood. Fevers, urinary tract infections, nerve pain and numbness, depression. Symptoms I tried to dull with alcohol, but the effect was temporary. Symptoms that only grew stronger over time. Around 2008, I began to lose feeling in my legs in a way I never had before. They started to give up, inexplicably. I’d been riding again, which I loved. One day, I was walking down a hill with my horse when, out of nowhere, I fell. The ground just slipped out from under me.
I wasn’t binge drinking then. In fact, I felt I was in a good place: I was happy, I was active, I had work. I decided, since I wasn’t drinking, it must be diet-related. I hired a chef to make macrobiotic, mostly vegetarian meals, inspired by Alicia Silverstone’s site The Kind Life. I ate tempura and fish in special sauces, made pots of green soups. I went to chiropractors, energy workers, every kind of healer. (What’s ironic to me now is that I spent so much of my life consulting experts, looking for signs, when all along there were signs right in front of me.)
Then I got shingles. Intense nerve pain, unlike anything I’d ever experienced, shot up and down my leg, into my hips. The shingles cleared up thanks to antivirals and rest, but I still felt unwell. My leg still gave out. Doctors told me it was postherpetic neuralgia – the body’s memory of the shingles virus.
This continued, off and on, for several years. Some episodes were petrifying. When my son Arthur was about three and a half, we took a trip to Palm Springs. In the car, my legs began shaking uncontrollably. There was nothing I could do to stop it. I was scared to drive, so I pulled over and told Arthur I was OK, I just needed a minute. I got back on the highway and drove for five miles before having to get off again. It took us hours to go just a few miles. Arriving at our hotel felt like summiting Mount Everest. When we finally pulled in, I practically fell out of the car. I told the concierge, “You have to help me. Something is seriously wrong.”
In all my medical-journal snooping, as I dug into depressive symptoms and alcoholism, searching for a link, I never once looked up movement disorders. It was unthinkable. Over the next three years, there were more and more episodes like that one. The symptoms grew worse. I saw every doctor under the sun. They blamed hormones, depression, anxiety, exhaustion, malnutrition, my “neurasthenic” nature. One doctor went so far as to tell me I might feel better if I had a boyfriend. Through all the symptoms, all the visits, I never once had an MRI. The only doctor who had mentioned multiple sclerosis (MS) as a possibility was my eye doctor, who saw me for eye pain when I was 22. I see now that most of those doctors, well-intentioned as they were, truly believed this was mostly in my head.
In early August 2018, I went to Miami alone to visit friends. I was shooting a movie in Atlanta and dragging from fatigue. I hoped the Florida sun and warm ocean water would invigorate me. It was a trip made for Instagram. I bought a tiny Eres bikini and Hermès shoes. Our friend wanted to enjoy the ocean on his new yacht. When we were out on the water, no land in sight, I walked to the edge of the boat and leapt high in the air. As soon as I hit the water, I knew something was terribly wrong. I couldn’t swim. The act of jumping had taken everything I had out of me.
I knew then that the body I lived in had dramatically changed. I found my legs and with all my might kicked my way to the surface. Unsure of what to do, I floated on my back. For a long time, I stared up at the clouds, keeping what had just happened to myself. I didn’t want to alert anyone. I turned it into a meditative moment. When I finally floated back to the boat, my friend Amy had to help me back on to the stern. I felt cradled by love and concern. She showed me the photo she had taken of my final leap into the air. I’m flying and it is glorious. My hands are outstretched ballerina-style, my legs are tucked under, my toes pointed. My mother would be so proud of my perfect form, thin in my bikini, tanned with blond highlights. I looked great. If you didn’t know, you wouldn’t know. But I knew. That’s when I really, truly knew.
It was right after this trip that I finally got the diagnosis. It happened so randomly that it’s a miracle it happened at all. I had posted on Instagram: Monday. So, I am in pretty intense pain. Whiplash a few times on my horse and sitting on planes … and now I am in a real musculoskeletal bind. Hanging in though. Hoping I can rehab it and get back to riding and writing again soon. #chronicpain is a real challenge. Love to all of us.
My friend, the actress Elizabeth Berkley, saw it and sent me a message. “Are you OK?” she asked. I told her all my symptoms; I would tell anyone who would listen at that point. “You need to see my brother right away,” she told me. “He’s a spinal neurologist. Maybe he can help. I’ll call him now. Stand by.”
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That’s how I came to be in Jason Berkley’s office in Beverly Hills. Social media can be noxious, but it can also be miraculous. On that day, it saved me.
He performed the Romberg’s test, a simple examination where you put your feet together and close your eyes. My legs gave out beneath me. I fell backward, dropping like a plank on to the exam room floor. He ordered an MRI on the spot.
With my eyes shut, I had no sense of where I was, but gravity did. And then, finally, answers. The scan was my new fortune-teller. The only one I needed. It revealed a number of midsized MS-related lesions on my brain, six of which were problematic because they were active. Little fires burning from canyon to canyon on the synapses. The connection between my brain and my body demyelinated. It all made so much sense now.
When Dr Berkley said the words, “You have MS”, I felt an adrenaline rush of emotion. It felt like giving birth. The release of it. The catharsis of it. But more than anything, I was overwhelmed by a sense of relief, like the way you feel when an ocean wave breaks right at the shore before taking you under. For years, my symptoms were dismissed as “anxiety” and “emotional”. It was all in my head, perhaps. It’s psychosomatic, they suggested. For years I’d known they were wrong (and right – it was in my head, only not in the way they thought). And now I had a map to follow. I had information. A label. This time, one that fit.
There are words that explain what is wrong with me. It’s not my fault. At least … I hope it’s not my fault. I can work with this. I can learn how to cope with this. It can’t get any worse than this. Or it can. I will teach myself how to be OK.
I thought back to the time when my mother cried with relief upon learning I was an alcoholic and suddenly understood why she felt comforted. There is great power in words. In an answer. In a diagnosis. To make sense of a plot you could hardly keep up with any longer.
In the moments after I received the diagnosis, and in the days that followed, I stayed surprisingly composed. I was so tired. I was too tired to be sad, I think. Too tired to be angry at all the time I’d lost. When Dr Berkley first gave me the news, I did cry. Loud, choking sobs poured out of me for exactly two minutes. And then I was done.
It’s life-changing, to be given a diagnosis of MS, or any other chronic disease. Even if you’ve lived with the symptoms for years, the story now has a name. It has a label. There is language for your experience. The future you imagined for yourself begins to morph before your eyes. Your plans, even the ones you didn’t realise you had, start to look radically different. In a moment, your life divides itself into the before and the after. You realise this body you’ve inhabited for so many years – this bizarre collection of cells – has turned against you. It’s more than a betrayal. You feel trapped, a hostage inside your own skin. You are a stranger to you.
It was a long time coming. My whole life I felt lost and wanted an answer. I’d looked for truth anywhere I might find it. I’d asked sages, healers, the universe. Now, finally, here it was. My diagnosis was the validation I’d been searching for – that I was human, and that it was OK.
I am so grateful that I was sober at that point. The biggest realisation is that I wasn’t a victim. I was done with self-sabotage. Now it was time to use every resource I knew. I saw with overwhelming clarity how every stage of my life has offered me incredible lessons. I had been given blessing upon blessing. My whole life I couldn’t get my shit together. But now, from this new vantage point, I saw how there is a natural order, if only you slow down and listen. It’s ugly and it’s messy, until it’s not any more. This is how we progress.
I announced my MS diagnosis on Instagram on 20 October 2018. I was working on a new show for Netflix and wanted to thank my wardrobe designers, who had accommodated my symptoms and helped dress me with loving patience and care. The producers told me, “Everyone has something,” as they held me through my tears.
My doctors urged me not to go public. They said people wouldn’t understand my diagnosis. They worried I wouldn’t get work. They said the disease might not progress beyond what I’d already experienced, so why share it? “You’re an actress; your body, your voice, it’s all you have.” But they were wrong; it wasn’t.
When Vanity Fair invited me to its annual Oscar party in April 2019, I knew I wanted to be there. I wanted to wear high heels, but because my gait had grown increasingly unsteady, I’d need my cane. My stylist found the most gorgeous Ralph & Russo dress. It had a cape and a choker around the neck, which I appreciated because at the time I was having a lot of trouble with my voice. I felt cocooned in this dress. Protected. I wore my hair gelled up and back – no side part any more. I’ve never felt more beautiful.
When I stepped out on the red carpet, with my beautiful dress and my cape and my bejewelled cane, and saw the cameras waiting for me, I broke down sobbing. My manager Troy came over and helped me collect myself. I was just so astounded by it all. This act – this very public act – of being open about who I am overwhelmed me. There was no turning back.
To my amazement, when the photographers noticed I was crying, they put their cameras down and stopped shooting. They waited, quietly, as I dried my face and found my balance. “You look great, Selma!” a paparazzo shouted. “We love you!” I’d never seen anything like it. I smiled and readied myself to pose. And then they started up again.
The next morning, the headlines talked about how brave I was. They called me a warrior. In that moment, I didn’t feel like a warrior, or any kind of hero. But I did feel a new sense of peace and purpose. I felt, for maybe the first time in my life, fully and completely myself. I was doing what I’d done for much of my adult life – just trying to get through it all as best as I could.
Years ago, when I was in high school, I saw a girl walking beside her mother at Sue’s country club back home in Michigan. She was young, maybe eight or nine, and her body lurched uncontrollably when she walked. It was a wonder; it was a terror; it was a shame. I’d never seen anyone like her.
Later, I described her to my mother. “What was wrong with that little girl?” I asked. I replayed the girl stepping jerkily over the concrete squares near our lounge chairs. Fragile, pathetic, awkward. My mom explained it was some kind of dyskinesia. “That poor girl,” my mother said. “And her poor, poor mother.”
When I play the scene now, I can still picture fat drops of pool water on the girl’s thighs catching the sunlight on her skin like an ill-fitting sequin dress. She was indomitable. I see now how beautiful she was in that innocent determination. And then I realise something: my mom was wrong. So wrong. I wish I could go back and tell her how wrong she was. This girl was not to be pitied. She did not want our pity. Pitiable and determined are simply not companions.
When I was diagnosed with MS, my life finally did markedly change. I became a kind of face for the disease, an advocate for something that matters to me. Though it’s a role I never thought I would play, it has become who I am.
The community of people I’ve found, and who have found me, have comforted me. They see the real me and accept me as I am – weak, raw, humbled, dependent, free, honest, sensitive, scared, hopeful. The mean baby is still there, but her edges are softer, wiser, kinder.
I don’t talk about MS as much as I craved someone talking about MS when I was first diagnosed. Now I realise that the simple truth is I can’t be a spokesperson for someone else when every person’s experience is so unique. As anyone who’s had MS for long enough would tell me, “It’ll be different for you.” Our experience is ours alone, and I’ll never know the extent of someone else’s.
At the same time, I think it’s important to talk about it. When it comes to chronic illnesses, there’s a lot of shame in disclosing one’s experiences. People judge. People dispute your symptoms. People say things can’t be proved. Let me assure you, this stuff is real.
Living with MS is not as bad as I thought it would be. It’s also way worse. My particular experience with this disease is that it has affected every inch of my body, from scalp to marrow. If I stand up too quickly, I fall. If I’m triggered by anything where I don’t know the outcome, I can’t speak. I sweat through my clothes, but I’m freezing. If I don’t take my meds, I cannot feel my body. I don’t know if I’m sopping wet or getting frostbite. Without my meds, I also lose the ability to speak. When I’m in a flare, I sound like a tantrum-throwing toddler, distraught and gasping for breath. I sometimes choke when I eat. I am sometimes incontinent. Like – enough!
The west coast sun is impossible. The light is impossible. The weather is impossible. I no longer see all the way to the horizon. There is no hanging out with my son and following the trajectory of our conversation. I will always be more disorganised and emotional than I want to be. My gait will always be affected. I pay my toll in fatigue.
There is more – there’s a lot more – that feels too complicated to share. In some ways, I’m doing amazingly well. I could dance for an hour if I wanted to! But the next day, I need a cane to get around. It’s also hard to quantify, because it is ever-shifting. The shape of my experience changes from day to day, and conversation to conversation. It occupies a vast terrain between good and bad.
I don’t have a lot of energy, and there are weeks when I sleep most of the day. That’s a very common part of MS. But then I think, some people don’t have the luxury of sleeping, and they have to get up and take their meds and go to their jobs and fight the fatigue. Then there are times when the dog pees in the house, because I myself am busy trying to pee, but it takes too long for me to get there, and I wet my pants. I am one of the lucky ones. I will always have another pair of pants. I know this. I’m grateful for this.
I understand why people with MS spend a lot of time in their homes: self-preservation. These small things add up. In my bedroom, on the floor that I’m used to, I can dance. But if I step off a kerb wrong, I’m liable to injure myself.
When I announced my diagnosis, to the outside world it seemed as if “it hit so hard, so fast”. But they didn’t see the constant fatigue or the years of inflammation or the signs that presented themselves all along. I’d gone through a lifetime of knowing. The only thing that changed was that I was given a name for it. I lived with so much self-hatred for so long. But now that I know what I’ve been living with – as best as we can determine, for at least 20 years – I can be gentler with myself. There is no “Why me?” any more. There is just me.
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George is Digismak’s reported cum editor with 13 years of experience in Journalism