Céline has Stiff-Person Syndrome

[Chantemoi]

Indie darling Sufjan Stevens just released a new album (which is like a full length album of the song “Say Yes” from Courage). In doing so, he also came out of the closet —something he avoided for years, even though it was an open secret— by dedicating the album to his partner who died this past April.

 

Last month, Sufjan was diagnosed with Guillian-Barré syndrome, a rare autoimmune disorder that affects the nervous system and has impaired his ability to walk.

 

This news reminds me a lot of Céline, who lost her love and then shortly after began suffering from a rare disease. But contrary to Céline, he is posting about his rehabilitation on his Tumblr and social media (even though he is usually very, very private). I know their conditions are not the same, but I thought the coincidence made sharing his story here worthwhile.

 

https://www.billboard.com/culture/pride/sufjan-stevens-dedicates-album-late-partner-1235438547/amp/

[PuraVida]

Indie darling Sufjan Stevens just released a new album (which is like a full length album of the song "Say Yes" from Courage). In doing so, he also came out of the closet —something he avoided for years, even though it was an open secret— by dedicating the album to his partner who died this past April.

 

Last month, Sufjan was diagnosed with Guillian-Barré syndrome, a rare autoimmune disorder that affects the nervous system and has impaired his ability to walk.

 

This news reminds me a lot of Céline, who lost her love and then shortly after began suffering from a rare disease. But contrary to Céline, he is posting about his rehabilitation on his Tumblr and social media (even though he is usually very, very private). I know their conditions are not the same, but I thought the coincidence made sharing his story here worthwhile.

 

https://www.billboar...1235438547/amp/

 

This is great information, thanks. Now I am thinking of other singers have gone through noted health conditions or health battles. Shania Twain, Linda Rondstadt, Neil Diamond all come to mind. Julie Andrews didn't have a health condition, but a bad surgery took away her singing voice.

 

By the way, did Sufjan Stevens ever mention Celine?

[Chantemoi]

 

 

This is great information, thanks. Now I am thinking of other singers have gone through noted health conditions or health battles. Shania Twain, Linda Rondstadt, Neil Diamond all come to mind. Julie Andrews didn't have a health condition, but a bad surgery took away her singing voice.

 

By the way, did Sufjan Stevens ever mention Celine?

 

Maybe in private? No, he’s not normally one to give a lot of interviews. Even after performing at the Oscars, for the songs he contributed to Call Me By Your Name, he’s consciously stayed out of the spotlight until his diagnosis.

 

Sidebar:

If I were compiling a list of artists for Céline to record/work with in the future, I’d include Sufjan Stevens and Brandi Carlile. Either artist would lend an incredible amount of legitimacy to Céline as an *artist* much the way JJG did for her in the 1990s.

 

 

 

Edited October 11, 2023 at 12:46 AM by Chantemoi

[Zofia]

Maybe in private? No, he's not normally one to give a lot of interviews. Even after performing at the Oscars, for the songs he contributed to Call Me By Your Name, he's consciously stayed out of the spotlight until his diagnosis.

 

Sidebar:

If I were compiling a list of artists for Céline to record/work with in the future, I'd include Sufjan Stevens and Brandi Carlile. Either artist would lend an incredible amount of legitimacy to Céline as an *artist* much the way JJG did for her in the 1990s.

 

Totally agree that Sufjan Stevens and Brandi Carlile would be dream collaborators for Celine (and BC, as a Celine fan, would probably love to work with her).

 

BTW, it's better not to get sick at all, but if it's unavoidable, and despite the similarities between GBS and SPS, we'd still prefer Guillain-Barré syndrome, which is not incurable: ¾ of patients regain full health fairly quickly, 60% regain muscle strength a year after diagnosis, and it's only in 10% of sufferers that the consequences prove long-lasting. With a relatively optimistic outlook, it's even easier to share on social media one's experience of the path to a very likely cure - although, of course, no one is obliged to make such intimate problems public.

[Chantemoi]

 

 

Totally agree that Sufjan Stevens and Brandi Carlile would be dream collaborators for Celine (and BC, as a Celine fan, would probably love to work with her).

 

BTW, it's better not to get sick at all, but if it's unavoidable, and despite the similarities between GBS and SPS, we'd still prefer Guillain-Barré syndrome, which is not incurable: ¾ of patients regain full health fairly quickly, 60% regain muscle strength a year after diagnosis, and it's only in 10% of sufferers that the consequences prove long-lasting. With a relatively optimistic outlook, it's even easier to share on social media one's experience of the path to a very likely cure - although, of course, no one is obliged to make such intimate problems public.

 

You seemed to have picked up on a shade of judgment I didn’t realize I had left in my last comment. While I respect Céline’s choice to stay out of the public eye, I also see what others are doing by bringing more awareness to these rare disorders. It’s an opportunity to talk about symptoms and treatment with a public that otherwise would remain ignorant. I’m sure we’ll hear her story when she’s ready, and I know we’ll all be more than a little relieved when she does… No matter the outcome, it will bring some closure to the situation, where now all we have is doubt and speculation.

 

 

Edited October 11, 2023 at 03:01 AM by Chantemoi

[Zofia]

You seemed to have picked up on a shade of judgment I didn't realize I had left in my last comment. While I respect Céline's choice to stay out of the public eye, I also see what others are doing by bringing more awareness to these rare disorders. It's an opportunity to talk about symptoms and treatment with a public that otherwise would remain ignorant. I'm sure we'll hear her story when she's ready, and I know we'll all be more than a little relieved when she does… No matter the outcome, it will bring some closure to the situation, where now all we have is doubt and speculation.

 

To tell the truth, I didn't want to imply any judgment on your part; perhaps I reacted automatically to the comparison alone ("But contrary to Céline, he is posting about his rehabilitation"), because their situations, even when it comes to diagnosis, are hardly comparable. In the small community of people with SPS, there are very few people who are active in the media, which can easily be linked to the specific nature of this disease (even the unbeatable Kylie Allen-Kulyk recently announced she's taking a break). Knowing Céline, her taste for sharing and her willingness to get involved in what she believes is useful and important for others, I'm not sure whether her silence is the result of a deliberate choice or rather of a physical or psychological incapacity, provided it's temporary. I fully agree with you that for us any confession on her part would be/will be better than silence, but at the same time we must recognize the inalienable right of every person to privacy. Before being a personality, you're a person; if she ever decides, whether forced by the situation or on her own, not to return and say nothing, that's her fundamental right. Some talk about it, others don't; no one can put himself in another's shoes…

[PuraVida]

Well it's not even a year since her official announcement of her diagnosis. There will be time for advocacy later, if that's what she chooses.

 

Celine never seemed that big on social media anyway, so it's not suprising that she wouldn't naturally gravitate towards documenting her fight. But, maybe this is all going into the documentary they're working on. And of course, each person will face serious illness differently, in ways that might even surprise the sufferer themselves.

 

I think she's already brought so much awareness and disease just by virtue of her name being attached to it. But I wonder what a "call to action" would even look like, i.e. what's the biggest advocacy org that could serve as the umbrella for this illness/fight for a cure?

[Zofia]

And of course, each person will face serious illness differently, in ways that might even surprise the sufferer themselves.

 

I think she's already brought so much awareness and disease just by virtue of her name being attached to it. But I wonder what a "call to action" would even look like, i.e. what's the biggest advocacy org that could serve as the umbrella for this illness/fight for a cure?

 

Exactly. It's not perhaps "advocacy" towards Céline, but patients in general, because they often receive lessons from our healthy community about how they should live with their illness - yet it's up to them to determine which strategy at which time best protects the rest of their well-being.

 

Céline's impact in raising awareness of SPS is immense: she might have been content to say "a very rare syndrome", but the fact that she had the courage to reveal the name of the disease was a game-changer; "according to search data, exposure to The SPSRF increased by 28,000% in December" https://stiffperson.org/news/spsrf-blog.html/article/2023/02/26/remember-the-zebras-doggone-it-

 

The more doctors hear about SPS, the more often it will be diagnosed, and without a significant growth in cases it would be difficult to carry out research that could lead to new treatments; as in the case of other rare diseases, money alone is not enough.

 

As for the organization that is already setting up fund-raising and educational activities, it is first and foremost The Stiff Person Syndrome Research Foundation, chaired by Tara Zier, herself a patient https://stiffperson.org/

[jolo87]

There's a lot for her to process and unpack before she makes any kind of move. Celine doesn't just operate as a celebrity or public figure, but rarher more like royalty (as she should). Her statements and stated intentions carry weight, because she means so much to so many people. If she continued to post updates about her rehab without mentioning performing again or recording new music (as she must not be able to, not knowing the ultimate prognosis yet) fans might get the wrong idea. At some point in time she may restart her career in a limited way with a strong focus around raising money for others who are not able to get the care she got (so that they can). Or she may make a statement that she is retiring from music completely and focusing on becoming an advocate for SPS sufferers and other people with rare, invisible disabilities. It's a lot for her to process and she knows she needs to make a move that offers clarity to millions of people around the world, and she also wants to do the right thing by herself, her family, and other people fighting the disease. When she's ready, the statement she will make will be comprehensive and will satisfy all of us to the extent that we can ever be satisfied by anything.

[jolo87]

There's a lot for her to process and unpack before she makes any kind of move. Celine doesn't just operate as a celebrity or public figure, but rather more like royalty (as she should). Her statements and stated intentions carry weight, because she means so much to so many people. If she continued to post updates about her rehab without mentioning performing again or recording new music (as she must not be able to, not knowing the ultimate prognosis yet) fans might get the wrong idea. She could post an optimistic video of her doing some physical therapy and thousands of people will comment saying she's finally better and when is she coming to their city to do the show?! At some point in time she may restart her career in a limited way with a strong focus around raising money for others who are not able to get the care she got (so that they can). Or she may make a statement that she is retiring from music completely and focusing on becoming an advocate for SPS sufferers and other people with rare, invisible disabilities. It's a lot for her to process and she knows she needs to make a move that offers clarity to millions of people around the world, and she also wants to do the right thing by herself, her family, and other people fighting the disease. When she's ready, the statement she will make will be comprehensive and will satisfy all of us to the extent that we can ever be satisfied by anything. Edited October 11, 2023 at 02:50 PM by jolo87

[Davey84]

I agree with you all...

 

What I find very sad and a bit eerie, is how the song after which Céline is named "Céline" is almost like a self fulling prophecy. The song is about a woman who is all alone, and the best years are behind her. Of course the song is about not getting married, but there's almost a parallel with Céline's career, to which she is kinda married, but now seemed to have "lost" it all. For me, for us, it might feel like she is all alone at the moment, because we don't know who is with her. Of course her kids, and Linda and her husband, probably doctors. But it would seem to me that she misses René the most in these difficult times. Maybe Céline is happy in her bubble and we shouldn't judge. But it is the not knowing part that is eating at me.

 

When I heard the song today, the ending stuck me the most. Where nous is of course us, the hardcore fans, supporting her all the way, what ever that ending may be.

 

Mais non, Céline, ta vie n'est pas perdue

Nous sommes les enfants que tu n'as jamais eus

Il y a longtemps que je le savais

Et je ne l'oublierai jamais

Ne pleure pas, non, ne pleure pas

Tu as toujours les yeux d'autrefois

Ne pleure pas, non, ne pleure pas

Nous resterons toujours près de toi

Nous resterons toujours près de toi

 

[tshlw]

She has said so many times if she couldn't sign anymore she would be fine. But don't think she ever thought this is how that scenario might play out. She has gotten everything she ever wanted with the support and love and hard work. So not being able to control this disease has to be so hard. Sure at this point she is nowhere close to believing she may never get to perform again.

 

I have also wondered who she has to lean on. Of course her sons but I am sure she does not burden them with everything as she will want them to be kids at least the twins and RC to have his life. Hopefully feels she can with Linda. But now it must really hit home not having Rene there to lean on and just be able to completely let go with, not having to be strong all the time.

[smw]

I hope that, if she wants to, Celine can manage her symptoms enough to continue her career in some capacity. We all hope she will be able to continue singing, record albums, and perhaps even perform again.

 

But even if her singing and performing days are over, she can still make appearances and do new projects and get achievement awards. Just as Julie Andrews has done since losing her voice.

 

Celine is so beloved. Even without singing, I can see her doing things that can be more controlled - like mentoring on The Voice, staying involved in fashion, doing more movies, making more videos with Vogue, etc. And we’d all love it if she worked with her team to start releasing rarities.

 

She can remain in peoples lives in those sorts of ways… I hope. Of course, I’m sure deep down she’s wanting to get back onstage in Vegas and work as hard as she used to. But considering her circumstances, that’s a tall order.

 

I hope right now she’s able to enjoy time with her sons as she processes everything and gets top of the line care.

[smw]

She has said so many times if she couldn't sign anymore she would be fine. But don't think she ever thought this is how that scenario might play out. She has gotten everything she ever wanted with the support and love and hard work. So not being able to control this disease has to be so hard. Sure at this point she is nowhere close to believing she may never get to perform again.

 

I have also wondered who she has to lean on. Of course her sons but I am sure she does not burden them with everything as she will want them to be kids at least the twins and RC to have his life. Hopefully feels she can with Linda. But now it must really hit home not having Rene there to lean on and just be able to completely let go with, not having to be strong all the time.

 

I’ve wondered about this too… Celine seemed to be very closed off once Rene died. She seems to distance herself from industry friends she had like David Foster and even people like Shania Twain and Gloria Estefan. Shania could really empathize, considering her own tough road.

 

It’s like Celine shed an old skin and surrounded herself with totally new people in her post-Rene life, with people like Pepe.

 

I think she has always been very guarded, only trusting her parents, Rene, and some of her siblings. And that must be especially difficult now.

 

I hope she’s also treating her mental health - because it’s just as important as her physical health. She’s endured a lot of traumas over the past few years.

 

Edited October 11, 2023 at 05:06 PM by smw

[tshlw]

 

It's like Celine shed an old skin and surrounded herself with totally new people in her post-Rene life, with people like Pepe.

 

 

I wonder if she is even in contact with any of those new people. Not that they weren't friends but were they more work colleges she saw mostly when working and when she was home with the kids she really didn't have contact with them.

 

What I wonder is the last time she was back in Quebec seeing all her family. I hope she has been able to and we just don't know it as this is a time when could use that support so much.

[PuraVida]

There's a lot for her to process and unpack before she makes any kind of move. Celine doesn't just operate as a celebrity or public figure, but rather more like royalty (as she should). Her statements and stated intentions carry weight, because she means so much to so many people. If she continued to post updates about her rehab without mentioning performing again or recording new music (as she must not be able to, not knowing the ultimate prognosis yet) fans might get the wrong idea. She could post an optimistic video of her doing some physical therapy and thousands of people will comment saying she's finally better and when is she coming to their city to do the show?!

 

That's why I was saying earlier that it's understandable that she might not want the huge media frenzy that's going to accompany an update or appearance she does.

 

She has said so many times if she couldn't sign anymore she would be fine.

 

She also said many times she wants to sing her whole life.

 

I've wondered about this too… Celine seemed to be very closed off once Rene died. She seems to distance herself from industry friends she had like David Foster and even people like Shania Twain and Gloria Estefan. Shania could really empathize, considering her own tough road.

 

Didn't Shania attend one of her last Vegas shows and meet her backstage? Gloria Estefan also attended her Courage World Tour and they met backstage, then Celine participated in that Covid telethon event that Gloria hosted. And she sent a video message for David's recent award in Canada for something or other.

 

That said, yes, it seems she didn't reveal much of her health specifics to anyone outside her closest circle -- it would warm my heart if she was allowing her (industry) friends to get close, if/when she needs them nowadays.

[PuraVida]

"Andrea Rawlins, 54, released videos of her former bike-mad husband Ian, 58, who's had Stiff Person Syndrome for roughly 18 years, writhing in pain from his daily spasms. The condition, for which there is no cure, is a rare neurological disorder where sufferers can both experience convulsions and become "like a statue” within their own bodies. And Ian now needs to take regular medication to help control his agonizing seizures, which can last for hours at a time. Andrea said after seeing Ian's heartbreaking struggle with the disease, fans of 'The Power of Love' singer also needed to recognise she won't "get better overnight".

 

She said: “People at first won’t accept how much her symptoms will escalate. At the moment, people believe that she’s sort of going to start singing again. “Depending on the severity of the symptoms, I think she will get worse with time – unless she has a stem cell transplant – which she may have access to. “I’m not sure of how fast it will escalate with her, but as it does escalate, people will become more and more aware that she doesn’t suddenly get better overnight.”

 

----------------------------

 

The video is here, which is heartbreaking to watch:

 

[Nmj]

She has said so many times if she couldn't sign anymore she would be fine. But don't think she ever thought this is how that scenario might play out. She has gotten everything she ever wanted with the support and love and hard work. So not being able to control this disease has to be so hard. Sure at this point she is nowhere close to believing she may never get to perform again.

 

I have also wondered who she has to lean on. Of course her sons but I am sure she does not burden them with everything as she will want them to be kids at least the twins and RC to have his life. Hopefully feels she can with Linda. But now it must really hit home not having Rene there to lean on and just be able to completely let go with, not having to be strong all the time.

 

I think Celine always said that before Rene passed away. The sad part is… I think for better or worse after Rene died she “needed” to perform even more. It was evident until the world shut down during covid and she gave what would become her last performance…. That Celine was enjoying performing live more than ever before. I think it’s because with RC being older and her twins growing and needing their mom less and less on the daily basis and with her mother also being gone, she had fulfillment from singing onstage multiple times a week and seeing her fans.

 

I really believe that if covid and this illness didn’t happen that Celine not only wouldn’t have slowed down but would’ve even ramped up projects and that’s sad this is how it’s playing out. I think she would’ve done that Vegas show, did more mini tours, properly promoted the Love Again movie, continued to accept acting roles and continued to release English and French albums. I hope she’s doing better if only even a little bit, I also hope she does an interview soon sharing about her courageous battle.

[PuraVida]

Well we do know that part of the job description or deal with Rob Prinz (if I'm remember this all correctly) was to procure her more acting roles.

[tshlw]

I think Celine always said that before Rene passed away. The sad part is… I think for better or worse after Rene died she “needed” to perform even more. It was evident until the world shut down during covid and she gave what would become her last performance…. That Celine was enjoying performing live more than ever before. I think it’s because with RC being older and her twins growing and needing their mom less and less on the daily basis and with her mother also being gone, she had fulfillment from singing onstage multiple times a week and seeing her fans.

 

I really believe that if covid and this illness didn’t happen that Celine not only wouldn’t have slowed down but would’ve even ramped up projects and that’s sad this is how it’s playing out. I think she would’ve done that Vegas show, did more mini tours, properly promoted the Love Again movie, continued to accept acting roles and continued to release English and French albums. I hope she’s doing better if only even a little bit, I also hope she does an interview soon sharing about her courageous battle.

 

I think you are right she needed all these projects because she need fulfillment as you said cause her kids no longer needed her the same way and with Rene gone and then her mom, performing was now her way to feel needed and fulfilled. I also hope she is doing better and able to enjoy being with her kids. I do wonder when or if she will do an interview.

[kaye2023]

I agree with you all...

 

What I find very sad and a bit eerie, is how the song after which Céline is named "Céline" is almost like a self fulling prophecy. The song is about a woman who is all alone, and the best years are behind her. Of course the song is about not getting married, but there's almost a parallel with Céline's career, to which she is kinda married, but now seemed to have "lost" it all. For me, for us, it might feel like she is all alone at the moment, because we don't know who is with her. Of course her kids, and Linda and her husband, probably doctors. But it would seem to me that she misses René the most in these difficult times. Maybe Céline is happy in her bubble and we shouldn't judge. But it is the not knowing part that is eating at me.

 

When I heard the song today, the ending stuck me the most. Where nous is of course us, the hardcore fans, supporting her all the way, what ever that ending may be.

 

Mais non, Céline, ta vie n'est pas perdue

Nous sommes les enfants que tu n'as jamais eus

Il y a longtemps que je le savais

Et je ne l'oublierai jamais

Ne pleure pas, non, ne pleure pas

Tu as toujours les yeux d'autrefois

Ne pleure pas, non, ne pleure pas

Nous resterons toujours près de toi

Nous resterons toujours près de toi

 

 

:(

 

I've typed out then deleted several versions of a reply, but I can't fully express how sad your post made me.

 

 

 

[PuraVida]

It's also delicate becuase, imagine if she were to have muscle spasms during the interview or on camera. She could not be 100% sure that said footage would not be leaked or shown at some point...

 

And I would hate for that to happen.

[smw]

It's also delicate becuase, imagine if she were to have muscle spasms during the interview or on camera. She could not be 100% sure that said footage would not be leaked or shown at some point...

 

And I would hate for that to happen.

 

True… Selma Blair has had some issues due to her condition on camera. I guess Celine would have to decide if she’s willing to take that risk.

 

And I guess it would depend on who Celine/ her team trusts to do interviews with. Didn’t Priyanka fall down at the Love Again premiere — and none of that footage ever surfaced? There are still people out there with class.

 

This video still brings me comfort:

 

 

Edited October 12, 2023 at 07:48 PM by smw

[smw]

. Edited October 12, 2023 at 07:53 PM by smw

[nuts2you]

 

I've found this Video, very interesting.

[PuraVida]

And I guess it would depend on who Celine/ her team trusts to do interviews with. Didn't Priyanka fall down at the Love Again premiere — and none of that footage ever surfaced? There are still people out there with class.

 

I wouldn't be too careful. You never know -- I suppose she could trust Oprah, but even then, you never know how many pairs of eyes look over or have access to footage. Even if it came out many years or even a decade later...

 

With her own personal video messages from her home, she can control the situation and the narrative.

[CelinesDIVO5]

 

 

I wouldn't be too careful. You never know -- I suppose she could trust Oprah, but even then, you never know how many pairs of eyes look over or have access to footage. Even if it came out many years or even a decade later...

 

With her own personal video messages from her home, she can control the situation and the narrative.

 

Celine can absolutely request a secure and closed set and set forth her conditions for an interview with whoever she is interviewing with.

[tshlw]

I do wonder if this is why no interviews yet because she does not want to possibly have a Spasm or appear weak infront of others. I believe she always wants to be in control of a situation so not sure she will do a interview until she feels completely in control. After being in the business so long you can tell she does not enter into situations she does not have complete control over. But this disease does not allow that since it can be so unpredictable, that has to be one of the hardest parts for her.

[PuraVida]

Celine can absolutely request a secure and closed set and set forth her conditions for an interview with whoever she is interviewing with.

 

Yes, I wrote my comments with the same knoweldge. But in my opinion, you can never be too careful. The set may be closed, but how can she be sure about what happens to the footage once it is recorded -- even years down the road.

[CelinesDIVO5]

 

 

Yes, I wrote my comments with the same knoweldge. But in my opinion, you can never be too careful. The set may be closed, but how can she be sure about what happens to the footage once it is recorded -- even years down the road.

 

Legal paperwork. Lol