I Am (Not) Celine Dion

Those of us in the Stiff Person Syndrome community have long awaited the documentary I Am Celine Dion, especially since she admitted on Instagram last December that she had Stiff Person Syndrome. I did a post about it here.

I watched it as soon as it was released on Prime. I think Celine Dion had an amazing voice but I’ve never really been a fan. We know a lot of her songs because they have been played over and over, especially ‘My Heart Will Go On’ which was the theme to the film Titanic. (Which I still haven’t watched in one sitting!)

She’s had some amazing hits and has a huge fan base. She was a regular in Las Vegas and still doing world tours until her Stiff Person Syndrome got the better of her.

I Am Celine Dion

I am Celine Dion is a documentary about her life. I learnt a lot about her like the fact she has 13…yes 13, siblings. Her Mother and Father were musicians but her mum had to stop working to look after her family. They didn’t have much growing up, and she talks about her mother making carrot pie for dinner because it was all the food she had in the house.

Celine wanted to be a singer at a young age and her voice became really well known after winning the Eurovision Song Contest in 1988 with Ne Partez Pas Sans Moi. (mmm yes, I don’t remember it either!) But she was already a known singer in Canada.

The documentary features her childhood memories and a lot of her more famous stage songs. It was focused on her career and life. She married and had three children, three sons, two of them twins.

She has suffered trauma, the loss of her parents, her brother and her husband.

Then she discovers that her singing is affected and no-one seems to know why. She claims to have a tightening in her chest that she can’t explain but it affects her ability to breathe and therefore sing.

Those of us with Stiff Person Syndrome who suffer the same call it ‘the hug’ I’ve cracked a rib during one such episode. I had a sickness bug and the effect on my body caused it to spasm and cracked my rib.

We go on to see her fabulous warehouse where she keeps all her costumes, she has a shoe collection to die for (if you like shoes…I have three pairs!) We get an insight into her life and an invitation into her home.

But what about the Stiff Person Syndrome? To be fair, she doesn’t talk about it much apart from the fact that it has stopped her from performing which she can’t accept. We do see her having IVIG (at home with her own nurse) and it’s explained that the Immunoglobulins are made from the plasma of thousands of donors…..please donate if you can, this keeps us going!

She talks about being taken to hospital and not being able to walk but we don’t see that. (I would have been interested as it happened to me!)

We see her working with her physio therapist, she can do things that I could only dream of. If I tried I’d end up in spasm.

Then, after an hour and a half we see her going in for a session with her doctor and she’s chatty and happy. We see her feet spasm. (Oh, I know how that feels.) Then her doctor lies her face down on the massage table.

This part I really don’t get, her feet are already in spasm, lying on your front is the worst thing you can do, it’s a big trigger, well, it is for me. I can’t lie on my front at all.

As soon as she lies down she goes into a full body spasm. This bit is traumatic. Her body stiffens and her doctor, calling for help, gets her into the recovery position and tries to keep her calm. Her eyes are flickering and she’s dribbling a little. Her body is still but every time they try to move her she cries in pain. Her eyes are teary. Then she starts to moan.

By this point I’m in tears because I feel every single moment, but I’ve never seen it from the other side. I know what she was feeling. The pain of every muscle in your body contracting. And she even explains afterwards, the embarrassment of not being in control of her body. And the apologies to those that helped.

I can see why it was left to the end of the documentary. It was for the shock effect! In reality, this is a regular occurrence for some people with SPS.

Stiff Person Syndrome.

The SPS community has been divided on the documentary. While some think she should have highlighted Stiff Person Syndrome instead of talking about her life, others are horrified because they don’t have it so bad and are scared for their future.

There are five (known) types of SPS

1) Classic SPS
2) Focal SPS
3) Jerking SPS
4) Progressive Encephalomyelitis with Rigidity and Myoclonus (PERM)
5) Paraneoplastic-Related SPS

Each one is different and although some parts may overlap it doesn’t mean that all sufferers will end up the same. The drugs available for treatment (there is no cure) work differently for different people.

I’ve known people with paraneoplastic SPS recover once the cancer is gone.

I’ve known people who have led relatively normal lives thanks the available medication

I’ve known people go on to develop lots of other conditions on top of SPS

It’s a rare and complicated condition, both neurological and immune related. It’s difficult to diagnose and I’ve never met two people who it effects the same.

I have type 4. PERM one of the rarest.

I have published my story on Substack and I’ve written a book. I’m currently writing a proposal for publisher. I’m hoping I have the confidence in myself to go through with it.

If you want to know more about Stiff Person Syndrome you can read this page here.