Céline Dion: If only I could help her

When I heard about Céline Dion’s affliction, the so-called Stiff Person Syndrome, my first reaction was, If only I could help her.

Originally published in Middle-Pause on Medium on July 29, 2024

The Canadian singer is one the greatest stars we’ll ever have, and it’s probably so fitting that she sang an Edith Piaf song at the Olympics this year — Piaf being another larger-than-life figure.

Dion, now 56, has enchanted generations with her singing and lived much of her life for music and her fans. She has such great dedication to her gift and the joy it can bring others, that when she needed time for herself, she almost felt guilty. This reminded me of Tina Turner, who also put other people first for many decades before she finally took time for herself.

Some of My Favorite Céline Dion Songs

Giving precedence to other people’s happiness is what Céline — if I may call her so— has been doing all her life. I loved her from my teenage years, when I would sing along to her 1995 hit “Pour que tu m’aimes encore” (“So You’ll Love Me Again”).

She released many of her most famous songs in the nineties, including “It’s All Coming Back to Me Now” (1996) and “All by Myself” (1996), but her major hit was “My Heart Will Go On” (1997), from the movie Titanic. She continued to record wonderful songs into the aughts and later on, including “I’m Alive” in 2000, to a total of 27 studio albums.

Enter the Critics and Céline’s Best Response Ever

In time, her emotional renditions became so big with people, especially with preteens and teens at the time Titanic was released, that she began to be considered too much by hipsters. Some people feel Céline embodies too much emotion and too much expression in her singing.

But with Céline, just as with Edith Piaf, too much emotion means a whole lotta heart, rather than, as some nonfans say, too much sentimentality. And I think this will have started to become apparent to these nonfans if they watched the Olympic Games ceremony.

That evening Céline was magnificent, her performance a symbol of the power of the human spirit.

I watched her with some trepidation, hoping that she would make it through the song okay. I also kept looking at that piano player — how he smiled into the air and at Céline as if he was almost out of his mind with joy. Here’s a link from Eurosport France for European viewers and a link from NBC New York for American viewers. If you missed the grand finale of the Olympics ceremony and you can’t see either of these videos, please look up Céline’s performance online — it’s worth it.

Stiff Person Syndrome

A day after the Olympics started, I watched I Am: Celine Dion, Irene Taylor’s 2024 documentary about the singer’s life and her recent struggles.

Stiff Person Syndrome (SPS) is a rare neurological disorder of the brain and spinal cord that affects about 8,000 people. It causes spasms that can sometimes lead to fractures, and, indeed, Céline has had some broken ribs as a result of SPS contractions.

As she explains in the documentary, this disorder can also make it difficult to just breathe, since it impacts the diaphragm muscles. It also influences the way she can use her voice, which can also be hard to live with, even as some other artists whose voices have changed over the years have found ways to make peace with it. Joan Baez, another glorious soprano, and Leonard Cohen come to mind in this respect.

But SPS attacks so much more than Céline’s voice, even as the latter is most important to her. SPS makes it hard for the singer to even walk for longer periods of time. Also, by impacting all her muscles, including those involved in breathing, she’s reminded of her illness every single moment.

Sadly, SPS can be triggered by a sudden noise, light touch, or emotions, all of which are present in a concert — all of which were present at the Olympic Games. Can you imagine the strength she had to go there and perform so beautifully?

We need a grassroots response for rare disorders

By the end of the documentary, after seeing Céline go into a full-body SPS episode, I was thinking that we as a society need more pooling of resources for certain medical conditions. People start foundations for more common disorders that make it easier to secure funding, but who is helping those with rare disorders?

I do not have the skills for it, but maybe what we need is a website where everyone who has an idea about how to help could leave a message.

I realize that Céline has a great team of medical professionals. It also seems from the documentary that she and her team have made great progress fighting this degenerative disease. The power of her voice at the Olympics ceremony attests to that progress.

But more can be done if more people help.

Someone new with a neuroscience background may come up with ways to calm down certain brain areas before she goes into a full crisis. Of course, her team is probably thinking of this, if they haven’t tried it already.

An MD with a background in nutrition may suggest she uses not just very popular plants like milk thistle but also an alga like chlorella for the health of her liver — and her doctors may then weigh in on that — since she takes so many meds.

Religious people may suggest praying since spontaneous remissions that baffle doctors do happen.

Other spiritual people may suggest meditation, to help her brain not be triggered by intense emotions, since this is one of the issues she’s facing. She went into that crisis I mentioned — which was very difficult to watch — because she got excited about a song she was recording.

Then other people may warn against the risks of meditation, and offer something else instead.

You get the idea. There needs to be a pooling of resources in situations like this where there’s very little scientific research done on some conditions. And one website, for one condition, will spill into other websites, as people come up with suggestions and other people in science take up that research.

We can do better for people suffering from Stiff Person Syndrome and other rare disorders.

Okay, that’s all I have for this piece. I hope it helps. Hugs and be well!

Disclaimer: I am not a medical or health practitioner, and no part of This Blog, or the articles, websites, and products I mention and link to on This Blog, is intended as professional medical or health advice, and should not be considered as such. Consult with your doctor(s) about starting any course of treatment, taking any supplements, or changing any (dietary, exercise, etc.) routines. Note that natural supplements and even some foods may interfere with certain medications. Also ask your doctor(s) about potential allergies you may have, including cross-reactive allergies. Some allergens can cause anaphylaxis. Here are my Full Terms and Conditions.

To a happier, healthier life,

Mira