The Truth About How People With MS Feel About Selma
The Truth About How The MS Community Feels About Selma Blair
We all remember the tricked-out cane that accompanied Selma Blair’s dramatic MS début at the Vanity Fair Oscars party in 2019. While the world gasped, the MS community rejoiced. Someone like her was someone like us. We felt the power of representation, a de-stigmatization of disability, and an increased awareness of the devastating disease we share.
From the outside looking in, you might think Selma is Queen of the MS Kingdom; and, to some she is. But a lot has changed since 2019. Look a little closer and you will find an MS community divided.
Support for Selma began to fracture when, shortly after her diagnosis, she underwent an intense chemotherapy and stem-cell transplantation procedure to treat MS. In fact, she was one of the last patients at Chicago’s Northwestern University to undergo Hematopoietic Stem Cell Transplantation (HSCT). (I myself was a candidate at Northwestern in 2014, but the six-figure price tag was a dealbreaker.)
At the time, HSCT enthusiasts cheered at the much needed awareness Selma’s celebrity would bring to this important procedure. But critics accused Selma of using her celebrity privilege to access the coveted treatment.
I don’t know if Selma’s status netted her an immune-system reboot or not, but who could blame her if it did? It’s worth mentioning that privilege didn’t protect Selma from the decades of medical gaslighting that kept her from being diagnosed and allowed her to become disabled in the first place.
Selma single-handedly broadened awareness of HSCT, while assuming significant personal risk. This isn’t an essay about the pros and cons of the procedure. HSCT isn’t right for everyone; but. holy shit, does HSCT deserve to be way more available than it is.
Selma filmed her HSCT journey and released it as the documentary, Introducing, Selma Blair. Supporters cheered for her vulnerability, for her insight into how tough the procedure is, and for showing the world the powerful results HSCT can yield. Haters slammed Selma for dangling a treatment carrot in front of a sick population of people who will never be able to afford the tens of thousands of dollars the procedure can cost.
The controversy around Selma highlights that MS is an under-served condition. MS needs to be better resourced so that Hollywood-level care isn’t a prerequisite to optimal MS outcomes. Instead of directing outrage at Selma, who is a real person, with a real disease, the MS community needs to demand better treatment and attention to the healthcare deficiencies her story has brought to our attention.
Selma Blair’s polarization isn’t just about HSCT
Selma continued to tell her story. In 2021 she published a best selling book, Mean Baby. In a few short years, Selma has easily become the most recognizable person with Multiple Sclerosis; the poster girl for surviving and thriving with MS. Just when it seemed Selma Blair couldn’t be any more everywhere, Page Six reported that:
“Selma Blair isn’t letting her battle with Multiple Sclerosis stop her from competing on “Dancing With the Stars.”
The Stans went wild celebrating Selma’s path from limited mobility to competitive freaking dancing. But, headlines like this can make it feel like the reason the rest of us aren’t dancing, running, or riding horses is that we’re not trying hard enough. MS can’t stop Selma, so why is MS stopping you?
It’s Selma’s world. The rest of us just have MS in it.
If you know anything about MS, you know that MS affects everyone differently.
But most people don’t know anything about MS.
If Selma’s experience is the world’s MS touchpoint, it can be frustrating to have to repeatedly explain the apples and oranges of MS. When the reigning Queen’s MS doesn’t look anything like yours it can feel like you don’t have representation at all. While some see Selma’s success as what’s possible, others are reminded of what they’ve lost.
Mainstream media can make it seem like MS is under control, and Selma’s experience is the ultimate testament to this half-truth. Yes, there have been tremendous advances in MS treatments in recent years. We must celebrate those wins. But for a troubling number of people, MS is very much not under control. The message that you can live a full life with MS is pervasive. That’s an important story. But, we need to tell the whole story. As comforting as best case scenarios can be, MS is still a brutal disease for many. If we fail to raise the alarm, we fail to mobilize the research and work that desperately needs to be done.
Selma has put herself out there, and it’s not her responsibility to manage how she is received. We all have a right to our own stories. Shine on, Selma, shine on.
It’s up to the rest of us to tell our stories too, and to fill in the blanks about what it’s really like to live with MS.
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This “Selma Blair isn’t LETTING (‘scuse me?) her battle with Multiple Sclerosis stop her from…” makes me want to screeeammm! I’m sure Selma is celebrating, as she should be, but when I see her insta posts, I often wonder how she feels about an entire community being compared to her. Because I’m also a poster girl for MS, but I don’t want to be the example someone else with MS hears about from their “helpful” friend. Am I that aunt’s second-cousin’s brother-in-law’s friend? I hope not.
I was diagnosed with SPMS in 2012. I was 43. I ran into Selma years later (via the internet.) I fell in love. I am single I can do that. I still love Selma Blair, but I think I love Adra more. I have been following her longer than I’ve known Selma and she has never disappointed. So true ms is a snowflake disease. I am well and wish nothing but the best for all ms’ers. Keep up the great work Tripping.
JE
What do you mean snowflake disease? We’re all unique? Or delicate and fragile? 😉 (I think the former! Also I have #MECfS not it appears based on my clear MRI #MS but am a fellow postinfectious cripple trhifn to learn from you lovely comrades! 🙂 <3
Bridget, Every snowflake that falls from heaven or the sky is unique. Hence, every person with MS has unique and different symptoms or disabilities.
I, of course have followed Selma Blair’s journey with MS. The HSCT treatment I knew right away was not for me, long ago. I was dx’d in 2013, have steadily gone downhill , and at age 61, have been encouraged by all the advances in treatments. They have not done anything for me but I keep hoping. The comment about medical gaslighting is so so true. We’ve all been in that place where we’re told that “your symptoms are not presenting like MS” or other nonsense. We’re not taken seriously, nothing to worry about, while we get worse. Thank you for telling the truth about this thief of a disease.
Ty, Dianne. One of the best and most powerful statements regarding this MonSter I’ve ever read.
I agree. I’ve heard people say that MS is an invisible disease, but that’s not exactly true. Sure, maybe in the beginning you get the “Oh but you look so good” comments.
I could be in a restaurant sitting casually with friends, and I’ll get that comment from those that didn’t see me come in on my scooter and transfer to a chair (The scooter is usually put away somewhere so it’s not an obstruction to others.) I feel, that because of this, MS isn’t a priority. Selma Blair has shined a light on the lack of accessible treatments unavailable to most people living off of disability.
For a long time MS has been minimized by the medical community and MS societies etc. Decades ago before current treatments, outcomes were often far worse. With new treatments came a new public relations spin. I think it started out well-meaning. They wanted those with ms to feel hopeful. They stated only on the positive, highlighted those less impacted, making ms sound not that bad. And for some people that may be true. But about 2/3 of those with ms can’t say that at all.
But the general perception is now that ms is not that bad. It does a disservice to those with ms when their doctors, families, employers etc are all under the impression that ms is no big deal. How invalidating. The current pr spin has done far more harm that good. I myself, when i first told my family of brain lesions and tests and ms experienced it first hand. I might as well have told them i was being diagnosed with the flu. One sister upon hearing ms responded with, oh, well that’s nothing.
In an effort to put an overly positive focus on the disease the public is left with an unrealistic and inaccurate understanding of what it actually is and what it can be for a lot of people.
Right on!
I have been asking everyone how did Selma do it? I could not believe finally someone is talking about this.
I want to dance! I have followed people that tried HSCT but it was in the early days and I didn’t see this type of positive response. Yes hurray for her – I can only be green with envy!
Time, my age, and other health issues, has slowly closed the door on me. I won’t be walking without the limp, jumping or dancing if only for a moment. But as you say “shine on Selma, shine on.”
One persons victory against MS is still a symbol of hope.
Good for Selma, I am truly happy for her. But and that’s a big but I am on social security not disability and I can barely afford to live let alone pay for any kind of treatments. I had Covid (long-term) and now I can’t even afford some of my meds anymore. So while some of us have had to go off meds and give up hope, we will keep watching you and smiling.
What bothers me is that she didn’t really do anything to advocate for HSCT. Look at these comments here and on any HSCT Facebook group where people wish they could get it but they can’t. She should be fighting the FDA with all of us ! It’s a crime that this isn’t available to anyone who wants it.
I didn’t qualify for the Chicago trial so I raise the money and went to Puebla Mexico, we are the doctor there is a top 50 Mayo graduate. Thousands of us have left our country to save ourselves. Other countries have been doing this for decades and the United States trials have been going on for almost 30 years with successful results and its still not approved. This is what she needs to be talking about.
Absolutely agree!! She has the voice but hasn’t used it.
I also had to go out of country to Puebla and Clinica Ruiz. It was top notch medical care and it stopped my MS and I have a life with a future now.
Perfectly said. Thank you.
While it’s great Selma Blair achieved some joy dancing despite her MS … I can’t relate personally as I can barely walk upright due to foot drop, weakness and hyper extension on the left .Main point is that her abilities/story is not as pertinent/relatable as I would hope to aid general population’s better understanding of MS as an incurable chronic disease .
I’ve had MS 46 years.there have always been celebrities. Richard Pryor, Annette Funicello, one of the osmonds. The same debates always happen, only the times, treatments and science have changed. Getting people educated about the disease while it brings frustration also educates people which is a good thing.
I feel the exact same way. I don’t blame her for the way the media has made her the MS poster child, but what really gets me is that the general public thinks that she is pretty much cured so why aren’t I? I too have foot drop, weakness and hyper extension and would do anything to just walk without aid. Dancing is out of the question.
MS is different in every MS WARRIOR. The snowflake disease. I choose to bring awareness of this debilitating disease. So many people don’t understand the disease. One persons story of resilience is another person’s story of hope.
As someone who had successful HSCT for PPMS in 2014, I was a bit dismayed by Selma’s representation of HSCT – I feel she has potentially put a lot of people off by her over dramatic depiction. I’m an ordinary person – one doesn’t have to be famous or rich to have HSCT. There are thousands of ordinary people with MS who have had HSCT – most have had to fundraise, or get finance one way or another – but it IS possible. There is even a Facebook group specifically to help people with that: HSCT Fundraising.
The most informative Facebook group about HSCT is:
HSCT Haematopoietic Stem Cell Transplantation for MS and Autoimmune Disorders 🙂
Nobody wants to get worse, do they?
Well said Gwen. I agree that Selma being an actor portrayed a really rough treatment. Having experienced this at Clinica Ruiz I cannot compare it to her experience in Chicago. But I feel very lucky to have had this under the care of Dr Ruiz. 🧡
More people need to know about the option of HSCT (& specifically Clinica Ruiz)
Thanks for bringing this up. I have been fluctuating on how I feel about her for the very reasons that you have listed. I watched her documentary just to see how overly dramatic it was going to be. I will say that it made me understand HSCT and I eneded up going to MX to have it done early this summer. I am still wondering if I didn’t forsake the MS community by having HSCT done.
The dancing kind-of stressed me out. One thing that I did notice was how her speech and walking was impacted at the end of the dance. I understood that completely! Is it fair that she did a shorter dance than the other contestants? How will that impact the scoring? How do we level the playing field so that people with disabilities can play in the same sandbox as people without disabilities?
I still have so many questions!
So well said! Thank you! I’ve had MS for 21 years and it’s frustrating when random people assume I should be learning about MS from her just because she’s a celebrity. All our stories are valid and the apples to oranges and “not letting it stop her” verbiage is so unhelpful to those of us who have been disabled by MS despite all our efforts, treatments, therapies, etc.
Thank you Ardra spot on! We’re so happy for Selma but can’t help to be human/jealous/hey what about me? Life is so unfair… money-Hollywood- power…c’est la vie! Rock on trippers!
There are people with ms who don’t have the proper symptoms that neurologists want for proper diagnosis. It had changed over the years. Some don’t have what they want when doing a spinal. Yet some who have a diagnosis don’t show when having a spinal. So lots of us are left with probable ms but no treatment. I can go into a hot tub which used to be the only diagnosis needed. But have tons of snowflake symptoms. It runs in my family. I am left out of support from ms society without definite diagnosis. Yet my neurologist still has me come by ms clinic. Limbo. Couldn’t pay for advance treatment even if I could pay. Because they won’t treat me. But I know I have it. Since I was young. Just didn’t know. Luckily government is assisting me on lack of ability. But the neuro pain is awful. Had test to see if peripheral it wasn’t. It was being sent from brain. My neurologist sent for this test. Yet ….
Hi Kitty please join MSpals:.A Multiple Sclerosis Community if you haven’t already. Once you’re in, paste this into a post. It’s a group for support & we do accept those in testing because the process can be exhausting. Many in the group will have thoughts to share that may help you get a diagnosis. 😘🤗
Have you had MRIs of your brain and spine?
I guess I’m just going to say it. I had symptoms that, had I had them investigated, might have caused me to have been diagnosed with MS many years before I actually was. In those intervening years, I climbed mountains, cycled, danced my ass off and had generally a very good time. I had the odd weird episode where my leg collapsed or went numb but it went away so I shrugged it off. Maybe Selma has future problems ahead. I, for one, am no fan of the cult of celebrity or the possibly false hope that certain treatments may promise to those of us with a disease which defies logic and baffles medical science. Raising awareness is one thing, understanding and empathising is another. And I feel we are very far away from the latter. We, the MS community, might be better occupied in supporting each other and uniting against the drug companies who must be fucking delighted to have expensive ‘treatments’ available for an, as yet, incurable disease. There’s nothing they like more .
🔥🔥👏👏
Bravo, Ardra, for addressing this hot topic. After reading through the replies, I don’t think I have anything pertinent to add. We must continue to forge ahead and always remember to support one another against the MonSter.
Ardra absolutely got this topic right and yes, I completely agree, support each other – not tear each other down.
I truly am very pleased and so happy that Hsct worked for Selma and she is now enjoying a new lease of life!
However, in the real world, I know numerous individuals who have had to sell their home, or fundraise tirelessly in order to pay for this treatment, to have gotten very little back in return! Little symptoms improved, nothing major, like walking unaided, let alone dancing! It doesn’t work for everybody, the press don’t publish this.
As a celebrity/ superstar MS and hsct has been brought to the fore.
I am one, alongside thousands of other true MS Warriors who battle on tirelessly everyday to help keep this disease at bay.
Diagnosed 2008, NO medication offered and left alone by the NHS, I have researched my own exercises, found the MS Gym and its community, I exercise everyday, this is my job, watch what I eat, and also incorporate mindset and meditation.
So I personally praise all other MS Warriors in the ‘real world’ that the press and media Do Not See.
Hi S, the aim of HSCT is to stop progression. There is no guarantee of any improvements, a minority do see improvement but that is not the point. If you have no progression, treatment has been successful. For relapsing MS, it is successful in around 80%, a bit lower for progressive. You are entitled to a review of your health annualy by the NHS, it is disgraceful that you’re not getting it!
I was diagnosed with MS in 2005. Back then there were only 4 meds. There has been much advancement since then and I am grateful for that.
The effects on everyone is different – everyone’s story is different.
Although I do not call this the “snowflake disease” because snowflakes make me smile just like hugs. So, sometimes I have an”MS Hag” that happens to me…
I have always been an athlete so progressing to SPMS has been very difficult mentally & emotionally for me.
I am happy that Selma is able to do what she does!!!
I couldn’t agree more! I feel like her celebrity status afforded her some treatments that isn’t available to the rest of us average Joes. And while I don’t harbour any hostility to her, I don’t necessarily believe her disease paints an accurate picture for many people with MS. When she talks to media, I would love her to acknowledge that the disease is different for every person and her experience is not the norm for most.
Selma is living and representing her best self. That “best” is different and looks different for everyone. It would be nice to see the media highlight a person immobilized by MS who may also be living his/her best life with insurmountable courage. This MUST be recognized and celebrated as success to balance the perception of the disease.
I just wrote about my feeling about Selma Blair last week too! I’m so happy to hear that I’m not alone in my up and down feelings for her. http://honeybearsandsydneybeans.blogspot.com/2022/09/celebrity-ms-turkey-meatballs-in-mango.html?m=0
Without Selma being a “poster girl for MS”, less light would have been shone on this debilitating disease. By doing so, lots of conversation has started. I’m seeing it as a good thing to continue the conversation and awareness by speaking, blogging, instagramming, facebooking and other social media & show/tell “our” side. We may never have been able to this without Selma’s “light” to help us on our way. See this as a positive and support each other, don’t tear each other down.
Remember, the sky would be awfully dark with just one star.
Great Post. I for one wish her well and hope she stays that way. She should dance while she can, she knows as well as anyone tomorrow could be different.
If I had the money I’d get HSCT. I don’t for one minute feel anyone should be criticised for what choices they make, or what opportunities they have.
Who or what is Selma Blair?
Ha!
I read the headline and I thought it was about the civil rights march in Selma, Alabama. I guess MS does prohibit you from marching. The other day I did a 10 mile walk for Diabetes.
Selma Blair is in a profession where there is a ” best by date”. Especially for female actors. She has been advocating for MS for a number of years. Instead of accepting the inexorable march to invisibility, she chose to reverse the damage done to her body.
I see her Dancing with the Stars performance being aimed at producers and directors. It may have been meant to revive her career. The damage was to her spinal cord and she was able to provide tangible evidence that she can move. Especially when she danced blindfolded. I hope Hollywood will take notice and cast her in a movie.
I want to see a movie starring Selma Blair.
I admit that I am totally MS judgy about her choice to go on Dancing With The Stars. It seems so reckless and disappointing. All of us with MS know that we need to avoid flare triggers. Excess heat (both from internal and external), fatigue, illness, stress, etc. I know that many people with MS are able to build up /train over long periods of time to being able to do amazing athletic things, but Dancing With The Stars is known to be extremely difficult and taxing on even healthy bodies. Her joining felt like a slap in the face to every time that I have listened to my doctors, dutifully slowing myself down, resting and cooling off, not powering through, prioritizing not triggering a relapse because I want to retain the functionality I have.
Hi Ardra,
I have a confession. I have no idea who Selma Blair is and I didn’t follow the Oscar’s party. But you are right we all have MS in our own way. Just as every individual is unique, so is every case of multiple sclerosis.
Furthermore, we all have our own ways of coping with this dreadful, debilitating disease. We find solace in sharing our experiences on our blogs.
I have been aware of Tripping on Air for quite a few years. Keep up the good work.
Mixed opinion about Selma. First night I had tears in my eyes and felt empowered and hopeful. She visibly had some walking issues after the first dance. The following weeks I would see her sort of “skip” merrily off the stage with her partner. Doing amazing cartwheels and turns. I personally could never turn my symptoms off and on like that. Not sure of the purpose of the dog either, she doesn’t seem to really need Scout for mobility issues but maybe I just don’t get it. If HSCT has that much of an impact before/after, I think I need to explore the options. Had she stayed one more week in the competition she would have had 2 nights in a row plus a dance off….so her departure was well timed., I don’t know how she would have got through that. It’s great she spreads awareness to the public about this horrible disease but it’s definitely not graceful and elegant!
I know how much difference a lot of intensive physiotherapy makes. I had incredible success with it, for months, until I had an MS exacerbation which wiped out almost everything I’d accomplished up to that point. But neuroplasticity is a real thing, and so I’ve been diligently working at physio since that flare and have recovered much of what I’d lost.
I say this because, before she started preparing for Dancing with the Stars, I was walking much better than Selma was. But by the time of her final performance, she’d soared far ahead of me and was doing things I don’t even hope to be able to do and was overjoyed for her. I see this as another testament to the power of purposeful, controlled exercise, like my physiotherapy, which is, frankly, pretty boring. (It’s not aerobic or calisthenic, just many repetitions of particular movements.)
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Maybe Selma is experiencing remission? I was told that in Canada, only a few are considered for HSCT.
Selma, keep on dancing, it’s fabulous exercise! You’ll never regret it. Every case of MS is different, and you must keep up with your own capabilities, no matter whether it’s called remission or whatever.
Am happy for anyone trying HSCT therapy, at worst they wasted money and better yet they may have stopped or even cured their MS. I think regardless of the outcome of any therapy those of us with MS try, I think it better to try and fail instead of never trying to battle this disease. I have tried different ways, most that the medical community laugh at, I know because a few Nero’s made the mistake to actually giggle in front of me, I doubt very much they learnt much form my response, as you may know it’s difficult to teach an old dog a new trick.
Knowledge and reality are as unique as humans with or without MS, and then equally unique is how effective anything we try to help or heal our bodies and mind works out. We all breath air, eat food and require love, some more and some less, the amount we need or acquire is equally unique. The only thing we can control in regards to our health is how great the level of inflammation is found in our mind and bodies. This is a concern for everyone, from the many health issues that are exacerbated by increased levels of inflammation such as cardiovascular, gastrointestinal and the many autoimmune diseases such as MS, inflammation affects us all sooner or later. Sadly, just because one has MS does no mean you can’t develop other health issues.
I’ve tied a few ‘alternative’ therapies to battle my incurable MS, and I’ve been relapse free for greater than 10 years and counting, I still managed to land in a wheel chair, can’t stand or walk. Summer heat and humidity does not affect me at all, the cold is a greater concern, I can handle the cold better than my mother-in-law form a tropical country. When tired I can have trouble with my right hand, when I worked, I could write with chocolate, I can’t use my right hand very well anymore. Cutting using a proper knife is no longer something I can do, thankfully I can still grind my coffee and use a French Press, this morning I had Colombian coffee from the Origen farm with a brownie, it’s a good thing I don’t smoke, one could have used a cigarette after the most wonderful way to start your day.
Despite health care being affordable to most in the first world but to some freedom loving Americans, wait sorry, Canadians and most of those in the first world are also rather keen on freedom. There is little for those of us with any version of MS one is dealing with to find help, even Salma Blair who has the means to try costly therapies, most don’t have such means to try experimental therapies. As I too am married to a banker, however, at best we can find some help with the effects of MS, such as a cane, wheel chair, glasses, etc., etc.…., all we can hope is for something is found soon, like many I’ve been waiting for some time.
Thank you for writing this! I couldn’t quite articulate and discriminate feelings and words in this subject but I agree with your mindset on this. After all, I have MS which makes me grumpy to see someone so beautiful as Selma- eh- not me. BUT! I think what we really need to remember is she is still going forward- being brave and letting people know about this illness. I haven’t walked in her shoes. I don’t know what she has gone through in her life. I only know mine. I think she has helped and advocate so many great things with calling attention to how many thousands of people are getting diagnosed with this every single day. It’s still happening!!! Nothing stopped this with her doing what she can. That’s the good. I’m sorry all of us are suffering in our own unique way with this yuck but let’s not tear someone down for being vulnerable with her situation. She might be rich in money but maybe that’s just what you want to see.