What made you confident that you could do something that hadn't been done before? I have no fear of failure. Trailblazing women changing the game. One of my favorite pieces of advice, think about what your boss's boss needs. Leadership can look in many, many different forms. It really does come down to just trusting yourself. Life is short and you just got to think big to accomplish big things. Julia Borsten hosts CNBC Changemakers and Power Players. New episodes every Tuesday, wherever you get your podcasts. This is strange. How come I can't hack life as well as everyone else? Hey, straight up. Look, you're straight up here. You probably have this 25 years, so there won't be plasticity for certain glitches, you know. You're the prettiest private set I've ever seen. Information and awareness is where we have to start to personalize it for all of us. It's okay. Everybody has something. Hi, I'm Becky Quick from CNBC. Thank you for joining us on another Step of the Path. If you've been following our podcast, you probably know some of my story. Good morning, everybody. Welcome to Squawk Box right here on CNBC. We are live from the NASDAQ market site in Times Square. I've spent the last 25 years on camera at CNBC covering the highs and lows of American business. And here we go, folks. It's Tuesday morning, and right now it looks like the futures are sharply higher. I'm also a mom to a child with a rare disease. Our daughter, Kaylee, has Syngap-1. She's one of less than 2,000 people on the planet with Syngap. Syngap is a neurodevelopmental disorder that causes conditions like autism, seizures, intellectual disability. People with SYNGAP often have difficulty communicating, and there is no cure. Learning to accept that diagnosis, how to parent a child with a rare disease, and then how to share all of this to try and help others, this is the best and most important thing that I've ever done. But it almost didn't happen. I spent years not talking about this major part of my life. Work was work, and home and family were separate. I didn't think I could show those two parts of myself in public, which is why I'm so struck by my guest in this podcast, Selma Blair. She is doing it all right in front of us. Selma, give us away! Selma! Blair's been a Hollywood star since a string of hit movies from the late 90s and early 2000s. Anja knew Cecile Caldwell in Cruel Intentions. I think it's a wonderful, sexy kind of spoof. It's just in the hands of teenagers and it gives it a very fresh, wicked feeling. A preppy law school student and legally blonde. The message was so positive that it was kind of a formula that couldn't miss. And she has overcome a lot. Uncertainty, abuse, addiction. She addressed her story in her recent memoir, Mean Baby. She read the audiobook. 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 very eyes. Your plans, even the ones you didn't realize you had, start to look radically different. Now, Selma Blair is living out a dramatic diagnosis in public, bringing people into her decades-long odyssey to discover that she has the nerve-damaging disease multiple sclerosis. M.S. causes fatigue, difficulty walking, sometimes difficulty speaking. It's a pretty tough combination for someone whose life is on camera. About a million Americans are living with M.S. M.S. isn't a rare disease, but Salma Blair actually reached out to us at Cures when she saw the coverage because the journey she's been on is so similar to what so many rare disease families have been dealing with. A hallmark of the rare disease journey is the long, winding road to answers and information. Many advocates are parents trying to do their best for their children and give them the best possible lives in the face of confusing or debilitating medical prognoses. Selma Blair has had to advocate for herself. Am I beginning? Am I good? Marking. We met recently in New York City and settled in. Her Labrador right between us. It's so cuddly. This actually makes it comfrey just a... It's a bolster. He's a hairy bolster. I am Selma Blair. I am an actress, a writer, and an advocate. I live with MS, and I am a single mother. And this is my service dog scout. And we started at the beginning. Were you a healthy child? I was not a healthy child. But from as early as I can remember, even in preschool, the teachers would say, something's wrong with her. Something's wrong with her. And they were kind of, it was like very accusatory to me. In kindergarten, I started having problems with one side of my body. And I would drag it around and say, you know, it hurt. And it was very, you know, for a kid that's neurologically seems totally fine. otherwise. It looked like I was just telling whoppers. So my mother, I was kind of the joke growing up of like, oh, Selma can see, but she can't see on Fridays. I was sick all the time. I had fever for years. I made graphs of the doctor had me write in. I was in hospital stays, complex regional pain syndrome things that they would treat with very kind of aggressive things. But they ultimately said I must have terrible clinical depression and was manifesting. They thought you were a drama queen? Mm-hmm. Basically. But I did have that fatigue all the time. And I could never run. I could go about five steps and then it would devolve and I couldn't figure it out. But I did just think, God, this is strange. How come I can't hack life as well as everyone else? But it wasn't so dramatic that it was recognized for what it was. It had to be awful to carry around. It was a strange thing to always feel. I did. I felt a lot of guilt and a lot of anger at myself and depression. And I had pain, you know, so chronically from a very young age. But by seventh grade on, it was definitely established. And we were seeking so much help. And I had bladder issues and things that were treated and surgeries to treat these things. But it was all really part of this chronic illness. But we did all just assume I was kind of just this dramatic person. And I did accept it, but it made me sad. It made me feel very other. When did that change? It took a long time before you got the diagnosis. It took a long time. I self-medicated as a kid. Even from the age of seven, I started drinking. I found it at a Passover Seder. And when I realized it wasn't God making me feel good by the fourth glass, that it was, you know, proof, alcohol. You know, that I was like, oh, this is what I need. But then when I grew up, I did realize, okay, I want to be taken seriously. So I didn't speak of these things anymore because you realize a grown woman that's so dramatic is not one that's really welcome in a workspace. So I found acting. We're lots. Welcome there. You know, necessity is the mother of invention. I mean, I've followed your career for such a long time. I've always loved your acting, your skill and what you bring through in this. But what was it like getting into these roles and having this in the background when you weren't talking about this, when you weren't telling people what was happening? When I wasn't telling people about what was happening, I think they just thought I was a strange person. I did have friends. I got along. But it was, I definitely had quirks and I definitely had friends in the business that in the middle of the day when I'm falling off my shoes or falling a lot. And I'm very goofy and very much someone that liked to use my body, gymnastics and things in my past. but it really was, is she on drugs? Is she drunk? Like I'd have friends, you know, actresses on set. Afterwards, it's like, oh, save your drink until the end of the day. Never would I drink on set. Never. You right I was lonely Yeah I was a bit confused why I couldn stay awake the same way as other people The lassitude and chronic fatigue, which is so common with brain ailments, especially as you get older, because it just takes a lot to make up for the difference of some brain, you know, a little bit of scorched earth or something. That road to diagnosis was such a long one. And it's something that's fairly common in rare disease, too, how long and how hard it is to diagnose with these things. How did you get the diagnosis? What was your reaction when you did? And it was such a shock. I couldn't even put together that what I was diagnosed with now, this MS, I didn't quite understand that I probably had juvenile MS. You know, as soon as they, as soon as the MRI was done, saw it, I didn't have to go home anything. I got a call from the neurologist that said, you have to get in the hospital. You probably had this 25 years, no definite way to tell 25, 30, who knows? You have, you know, it's been here a while. It shows on the brain. And the deep gray matter did have some volume loss. So there won't be plasticity for certain glitches, you know. But the diagnosis to me was the first time I've had a diagnosis, really, other than a depressive or someone that was using alcohol. I was thrilled to have a receipt of any sort. Mean Baby, a memoir of growing up. This is the author, Selma Blair. Because I was diagnosed during a severe flare, I was able to begin a series of treatments to halt the progression of the disease. The onset of my worst symptoms was dramatic. so it made sense to me that the treatment needed to be similarly dramatic. My sister Katie was the first one to mention HSCT, hematopoietic stem cell transplantation, as a possible therapy to slow the progression of my disease. I did ultimately opt for an aggressive form of a bone marrow transplant to halt the progression and to reset the nervous system. Did it work? It might have bought me some time. And I was very hopeful. And it was very hard for me. But it turned out, even on my MRI a year later, I had relapsed or I had never gone away. I finally, I was not improving. And I thought, oh, God. I so wanted to believe I did. And I was doing interviews. And I couldn't really speak in them. But I wanted to think, oh, God, I have to go back to work. I went to this new doctor, Dr. Berkovich. And it was the first woman and mother that I had seen. And it was a very different approach to dealing with me. And it was very calming. And I could listen to her and more options she was laying out, even though I said, no, I've already done this aggressive treatment. There's nothing for me. And she had to advocate for me. She had to really educate me. And a lot of doctors hadn't done that because people are busy. So what did she tell you? And so we found another treatment, and that is what I took, and that is what worked for me. It is so different for everyone that I never want someone to think, okay, that's a miracle thing. It was my miracle thing at this moment, and maybe I'll need another one later or maybe not. Well, the message is just because one thing doesn't work doesn't mean another won't. Right. Exactly. And that's also why I joined, I became a global ambassador for the American Brain Foundation and National Chair for Brain Health because it was so foreign to me. and what they're doing, it's finding a cure for all brain disease. And with the information and AI and things that it could go to, rare brain diseases or more common ones like MS and Parkinson's, it's a stacking and information and awareness is where we have to start to personalize it for all of us. So I do talk about things that are off, but you still want to say, I'm capable, I can do this and I can. And that's why I talked originally, because I knew nothing when I was having these symptoms. And in one spot, I couldn't move or have suspension on my leg. But then I'd get out in the field and I didn't even have a limp. And I thought, oh, my gosh, I am making this up. Like, it was so good. I didn't know that the brain can change. But of course it can. I also didn't know our teeth move our whole life. You know, like, I don't think I realized we're real living beings in all of us. And it's not a mainframe computer. It's our nervous system. I admire your advocacy because as someone who is in front of the camera, to be able to, I mean, you probably felt, just as an actress, the need to protect what small bit of privacy you had. Yes. What got you to the point where you said, I'm going to talk about this and why? When I was diagnosed, I went back to work the next morning. I had to get on a plane to go to Atlanta. I was shooting a movie. It was a small role, but I was so excited because I was going to force myself to get back to work. I thought, okay, stamina. But then I was diagnosed in the middle of this shoot and I'd come home because I was falling and having vertigo on set and thinking, ooh, for the first time I missed my call time. You know, like I slept through it and I thought, this is something I've never done. The doctor said, don't tell anyone because you know what? In a couple of years, you can regain all your abilities. This is just a, it's a flare and you're relatively young and it could be okay. You just don't know until what's happening. But the producers were so wonderful. You told them. Over at Netflix, I did. I did have to tell them because it was a, there was also a series and it could go for a long time. So I did have to give the information. This might be something we're going to have to work around. And they were amazing. And they were so, I've never had such kindness. And I don't think I'd ever asked for anything or divulged anything that personal without it being a quirk or a drama or that, you know, it was just very factual. And it heartened me. More of The Path right after this. What made you confident that you could do something that hadn't been done before? I have no fear of failure. Trailblazing women changing the game. One of my favorite pieces of advice, think about what your boss's boss needs. Leadership can look in many, many different forms. It really does come down to just trusting yourself. Life is short and you just got to think big to accomplish big things. Julia Boorstin hosts CNBC Changemakers and Power Players. New episodes every Tuesday, wherever you get your podcasts. Welcome back. This is The Path. I'm Becky Quick. Selma Blair went public with her diagnosis of MS in late 2018, and she took a leap of faith, but she discovered real community and support. She wrote beautifully about what it was like to share her story in her memoir, Mean Baby. 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. I couldn't use my hands correctly at the time. I couldn't figure out the dynamic of getting my pants on and off. And people took such care with me. And I didn't know it could be like that. And so I really was one day, I looked pretty good in the dressing room. And I was like, oh, take a picture. And realized, oh my gosh, I'm here. These people dressed me. And I had such appreciation that I wasn't scorned or sent home or people thought, you know, I wouldn't be able to handle it. They gave me the benefit of the doubt and helped me. And that meant so much. So my post on Instagram was really to thank the people who helped me, not realizing I'd been kind of out of business for a while because I hadn't felt well. I was just grateful, you know, to work. So I just was so happy to thank the people. And I had no idea the impact that would have on some people that were looking for visibility or looking for understanding of their own neurological or chronic illness journey. I don't know. There was a huge response, and even stranger, a bigger response when I showed up on the red carpet with a walking stick, with a cane. And that's when I started to feel a responsibility, the joy visibility could give other people. Yeah And I saw teenagers like on TikTok after the cane and they like had a song and a Selma Blair could do it And I thought oh my God how do these people even know me And how wild that your most vulnerable moments can just reach someone else Yeah That that that sense of advocacy as you mentioned you are taking this on not just for MS but for so many other issues How you get to that point I think my whole life was in training of just being so unsure of myself that all I really wanted to do other than live an okay life and be a mother was to maybe if I could comfort someone else so that they could have a little bit of strength and room to continue with what they need to do. It was that simple. And I did feel, I did feel so lucky to be able to have a platform and be able to still, I just know how hard it is for people. You know how hard it is for moms. I just, I mean, I wish I could do more than just be visible. Sometimes I'll be like, oh, and I just, you know, but we're just people. I hear that. I hear the, yeah, you feel like you want to save everybody, right? You wish you could, I mean, make everyone feel better, but I don't even have time to be a good friend anymore to people because if you're just done with your work or get home to your son, Those are the things that, you know, maybe I was kind of lonely when I was younger and didn't kind of understand myself. And now I do have a much better understanding of myself. But I don't have the bandwidth for a social life or to keep up with friends or to always check on to be a good friend. Right. You know, because you're just getting through life when you have chronic stuff. And I'm doing really well. I am. Like, you said something that you feel like your life kind of built you up to this. You feel like this is your mission in life? I think we're going to always find our missions. I don't know if people even consider me an actress anymore, but that's still part of me. And then I know that a set is a comfortable place and a creativity and a job and, you know, a community. And it's something I so much want to go back to. But I really just have to also listen and see maybe little places where someone like me is needed. Did you worry by telling the producers on that Netflix film that you would never be able to work again? That people wouldn't hire you? I was worried my doctor, even the doctor I had at the time, had even said, do not tell people we find this. People, you'll be fired. Like, do not tell people. And so it took me a few months. I mean, I just didn't immediately go, yeah, I got some receipts. This is why everyone thought I was so wild. But it took me a while. What did you say? I get some brain fogging. Where are we? Just this idea of were you afraid to tell? Because, I mean, I was afraid to tell my bosses the two times I was pregnant. Oh, my God. Right. I didn't even want to tell them about a pregnancy. And even though you're so valuable and that's undeniable. So we shouldn't feel that way. But that's just you got to keep up with life, period. Yes, I was. But I was manifesting too many symptoms at that time. Also not to. You know, they built a cane and my dog's getting comfy. I love Scout. Scout is very Scout. It heard me with my voice. You know, my voice was kind of breaking before. So Scout came up and he does comfort me. And just having this body next to me helps regulate my breathing and diaphragm and voice better. So it is a good purpose. He's a good boy. It caught me off guard, too. I struggled for six and a half years, my husband and I, going back and forth about whether we wanted to talk about any of this. And I was mostly concerned about letting Kaylee get out there, but I also didn't think I could talk about it on air without crying. So it took me a long time to get to that point because there was always the separation between my life and then what I do. And it's hard to do what you do and still be thinking about what else is going on at home. Is this the same thing for you? No, it's so painful. I mean, my child is my heart. Your children, your family is your heart. My MS wasn't, isn't, isn't the hardest for me. I feel like I can handle what happens to me. I'm pretty resilient. And it was, it was being a mother though. And my own son having his own health journey. Anytime your child, you feel they might need you or you're hopeless. Well, the thing that's so amazing to me is you're so well known. You have resources, you have connections, you can reach out and find these things and I and you couldn't get the diagnosis I was lost it was a hard thing I felt very hopeless I cried a lot from fatigue and fear and fear I would provide for my son and still you know I will always have a lot of empathy for the scared parts of us that are trying to um do the right thing by the people we love yeah and feeling so awful at the same time. Yeah. You know. How do you feel now? I'm tired all the time. There's some moments I'm grateful and I feel pretty good. Like my abilities are like, I think I was like an eight on a disability scale. I went down to four. I mean, I'm like doing really well and I can do a lot of things. But it is hard. I wake up more exhausted than when I went to bed. And I have to really try. I have to really monitor my energy. There's so many fun and exciting and horrific things in life. And when you're tired, it can be mistaken for depression. You know, I had a baby when they need to sleep. They seem miserable. They seem really anxious and depressed. And that happens to us grownups. I just have to learn to keep my wits about me. But I am doing well. I really am, and I'm happy to get back to acting. I feel more confident now that I've found the treatment that will keep, you know, that has my MS in a good place. And so now I can push myself more because I've been relapsed free for a couple years to have brain plasticity and the time and the emotions to be able to handle with improving. Well, that's what I was going to ask you about. You said you're not sure if people consider you an actress. I do. How do you see yourself? I am definitely an actress, but I meant the perception from the youth and the TikTok and Instagram and things that, you know, are a little more challenging. I'm a much better actress probably now than I was before because I didn't know who I was at all. And not that I need to be myself for every character, although I mean, I'm not that great an actress. I'm still going to have a lot of me in it. But I think that you're better for what you've lived through. I do. And the emotions that you have earned. I agree with that. I think any time that a character or just the tool, the person, the instrument, any time our thinking is more reliable and we can be more grounded or get to that place, we're going to be better at our jobs. You're just more empathetic as a result. We're more empathetic to other people and ourselves and the characters we're playing. What made you confident that you could do something that hadn't been done before? I have no fear of failure. Trailblazing women changing the game. One of my favorite pieces of advice, think about what your boss's boss needs. Leadership can look in many, many different forms. It really does come down to just trusting yourself. Life is short and you just got to think big to accomplish big things. Julia Boorstin hosts CNBC Changemakers and Power Players. New episodes every Tuesday, wherever you get your podcasts. But I did realize with the adrenaline of stepping on the stage not nervous just normal and the music starts and I have my dress Oh this looks like Dior Couture from the 50s Christian Siriano made this gorgeous old Hollywood dress And the music came on and I could not find my life I couldn find either of them I really couldn't. And I knew it was such a friendly audience because they're there for, you know, charity really, for funding for research and health issues. But it was a shock. and so I'm trying to play it off but and then at the end I did fall you know I couldn't collect myself so I'm trying to spin because with some neurological things once you're off balance it's a bit harder to regain it right but it was that was a little reality check for me to think oh yeah it's it's still here and when you have a traffic jam in your brain it still shows up and I and I know it does in my day the day for my voice and stuff but usually you know I can can keep it but yeah, to fall, to be, to feel so beautiful and then to have, but then I see the video and it's hysterical. Like I couldn't help but laugh. I just fall out of frame. It's like Cecile Caldwell. It's like so on brand for every Pratt Fall character. And I just thought, well, this is just the truth of it. And the audience, you know, so lovely. Someone's husband came and lifted me up and I still could barely get off the stage, but it was one of those moments that's just life, you know. Life has a way of keeping us all humble, I think, making sure of that. I love your sense of style and how you've been able to curate that. And it's some of the partnerships that you're working with now. You were wearing glasses before. This is part of a new partnership that you're doing. Yes. Benny's. Of course, I need readers as I'm older. But I found these great pair of glasses and I got in touch with the founder, Susan Berryman of Benny's, and said, I loved your glasses because I had lost my pair and I was devastated. And I was like, ah, okay, now I know I'm going to, you know, there's a, there's a hole in my market. So I must buy, so I must buy. I had a friend that was like, oh, how do you start a business? You look for the hole in the marketplace that you can fill. I'm like, okay, there's that hole for me. I need a new pair of glasses. So I called and we, we did a collaboration and she's a Michigan girl like me. It turns out we're like from the same area. So I just incorporated, these are the Arthur named after my son and sunglasses and then some readers and there's molly these that's my mother and kelly my horseback riding trainer a friend from growing up so there's it was a personal um it just felt right to me and they did um some of the some of the proceeds of course go to benefiting the american brave foundation which is really an amazing thing to help small businesses also these young, these entrepreneurs that are making this incredible product to have them partner with something as, you know, huge as the American Brain Foundation and it personalizes it for people buying it. It's not far away. Each of, each donor contributes. Let's talk a little bit about the sense of responsibility. Do you feel a sense of responsibility to use your platform. Yes. I do feel a sense of responsibility to be genuine and authentic and to my audience, to the people that do follow me. And that means everything to me, that they could trust me. I mean, I'm not saying I'm always right or, you know, but I am someone that will speak my truth and hope for the right thing and correct myself when I do make mistakes and that is the best I can do but it is important for me I do feel responsibility to the people that follow me and they have given me so much too yeah because I think you do get it back um even if there's any gratitude or someone just being there is um it's proof we still exist and that we're serving a purpose and then we're serving a purpose Yes, and it's important to me. I know it's hard to think of having MS and being grateful, but in a lot of ways, you seem pretty happy right now. I am. It's so funny because I was told my entire life I had clinical depression. Right. Because I had MS probably and I was very tired and get abused and didn't, you know, brain fog or whatever it is, didn't feel well for, you know, months at a time. It is, because what's the alternative? As Carrie Fisher used to say, you know, if it's not funny, then it's just true. With things in my life, you know, I'd really become aware of my mortality and issues and some really scary things have happened to me in past treatments. Or, you know, my searches for things. So I think I lost the train of thought. I have brain disease. Go ahead. There's always that. Oh, the MS. No, but I realize. You're happy with MS. I'm happy. I'm working on being always a happier person. And I know that I am lucky. I mean, I have it a lot easier than a lot of people. I have it a lot harder than some people, but a lot easier than a lot of people. Yeah. A lot. And I will tell you, Dan Gilbert, the owner of the Cleveland Cavaliers, Rocket Mortgage, he's had some horrible things that he's been through. A stroke, a child with a rare disease who passed away. He said, nobody gets out of this life unscathed. And he's right. That's it. And I think it's so funny when people go, oh, this terrible thing, this tragedy, you have this thing. One, mine is okay. But I'm like, what are we all kidding? I was always a very cynical kid. I'm much more jubilant and lighter than I ever was as a kid. So I'm a bit new at it, so I can go a bit over the top. I'm trying out how to be this positive person. I'm like, oh, that ring true. I like it. I'm a little excited. Wear it well. I'm not trying too hard, but I am kind of aware. I can sometimes be a bit much. But again, I forgot what I was saying, but I'm sure it was going to be great. Yeah, no, I just, I think, yeah, oh, it's crazy, right. I'm like, oh, God, it's so tragic. What are you looking at, person? You could be hit by a car tomorrow. Sorry. I'm not saying that in some evil way. I just meant like I am very aware. Nobody knows what they have left here. We are born and we die. And there are going to be some things that are very painful in life and some things that are really kind of magic. Thank you for your time. Thank you for your advocacy. And thank you for what you're doing. Thank you so much. I loved talking to Selma Blair about her story, her search for answers, and the life she's made for herself with MS is beyond inspiring. The thing that jumped out the most is how positive of a person she is, even in the face of this diagnosis. I told Selma about what businessman Dan Gilbert told me, that no one makes it out of life unscathed. He's my guest on the next episode of The Path. Dan's an incredibly successful entrepreneur, also the owner of the Cleveland Cavaliers. He lost his son to a rare disease after a long battle. What's going to happen next? You can't focus on the past. There's nothing you can do. I mean, when you're dealt a card like I was dealt with a stroke or a stroke, you just have to get the next card and try to play it. I mean, things you can't control. Thank you for joining me on The Path, a podcast and videocast with CNBC Cures. I'm so proud of the community that we're building here. Thank you. You can subscribe to the CNBC Cures newsletter. That will give you the latest news on rare disease advances, legislative and regulatory attention, and the stories of patients and families that are waging the battles of their lives. Episodes of The Path are on YouTube, cnbc.com, and on podcast platforms. Just tell us what you think in the comments. Or you can email us at cnbc.cures at cnbc.com. please keep sharing your stories and your questions keep coming back we're really glad that you're here I also want to thank my producers and the team at CNBC for their work and their support on this and we will see you next time what made you confident that you could do something that hadn't been done before I have no fear of failure trailblazing women changing the game one of my favorite pieces of advice Think about what your boss's boss needs. Leadership can look in many, many different forms. It really does come down to just trusting yourself. Life is short and you just gotta think big to accomplish big things. Julia Boorstin hosts CNBC Changemakers and Power Players. New episodes every Tuesday, wherever you get your podcasts.
