16 June,2024 09:05 AM IST | Mumbai | Devashish Kamble
Celine Dion opens up about her battle with Stiff Person Syndrome in the interview
The show must go on, they say. But at what cost? In a recent interview, Canadian mega star Celine Dion revealed details of her struggle with Stiff Person Syndrome, a rare neurological disorder that causes muscle stiffness and spasms. Through her candid retellings, Dion has sparked conversations about unhealthy work ethics, the pressure of commitments, the pursuit of excellence, and an artiste's eternal need to be on stage.
Reaching out to friends and colleagues at the right time is vital
"I'm going to go onstage even if I have to crawl, even if I have to talk with my hands, I will," she said in an interview with NBC's Hoda Kotb, referring to her comeback. City-based artistes who have come back stronger from similar setbacks give us a peek into what the journey entails.
Scheduling periods of rest and recovery between performances can be beneficial for artistes recovering from an ailment. REPRESENTATION PICS
My condition was initially misdiagnosed as rheumatoid arthritis before I was correctly diagnosed with psoriatic arthritis, a significantly graver condition seven years ago. After a particularly serious flare-up last year, I took some time off from performing. In a profession like stand-up comedy, we're expected to stand and walk around, both of which would have been a struggle for me. Returning to the scene, I have taken to sitting on a stool to perform after the incident. The short-term goal for me is to be able to do shows standing up. Interestingly, I have noticed how going back on stage eases the pain.
Dion performs in Las Vegas. PICS COURTESY/YOUTUBE
Mentally, I haven't fully come to terms with how it affects my life as an artiste. But my first lesson from therapy is to feel every emotion fully before letting it go, and to plan my life around the condition to be as productive as I can. For instance, I now plan which days are for performances and include resting periods. Along the way, the stand-up community has been extremely accommodating to my changes. Producers have moved shows to more accessible venues and senior comedians have been patient listeners and cheerleaders.
Note to self: Try to strike a balance between being productive and tending to your health. Don't ignore either along the way.
When I noticed shortness of breath and fatigue while performing, or simply going about my day, I immediately consulted a doctor. Unfortunately, it was repeatedly misdiagnosed as a panic attack and it took multiple hospital visits over two years before I was told I had stage three lymphoma. Performance had to take the backseat as I locked horns with the big C. Having a solid support system in my family and my guru were key to my recovery. I would go watch kathak rehearsals to keep my passion alive. When I finally beat cancer two years later, I realised it was still a job half done. I was frustrated that I couldn't dance the way I used to. The pain would increase, and I had to take extra painkillers. I gave myself time and started slowly with a few basic steps, moving just for fun without pushing too hard. Practising became therapy for me. Though I can't perform kathak with the same proficiency as I used to because of orthopaedic issues, I still perform to the best of my abilities at private gatherings, and for online sessions.
Note to self: Be prepared and equipped with the right professional resources post recovery. Prioritise your mental health at any cost.
It all started with feeling too burnt out, too often. I would look at my guitar, and just wouldn't want to play it anymore. Instead, I would stay in bed for days, streaming shows on my laptop. Like anyone dealing with this for the first time, I was lost for an explanation. It took me three months to open up to friends and subsequently, a therapist helped me identify this as depression and put me in good stead over time. A large part of getting back on stage is realising that everything is not going to be perfect. It has helped me to pre-empt things and be better prepared to deal with bad days. Getting back on stage a year later, I realised that I was treating my journey as an artiste like a sprint; on my toes constantly to make and release music. You have to realise that it's a marathon, where there will be slow days and eventful ones. It reflects in my performances now. They are planned around smaller pleasures of life like travelling or catching brunch with close friends.
Note to self: You are not superhuman. Keep your eyes on your long-term goals, and take short-term setbacks in your stride.
Notable comebacks
>> Singer Selena Gomez (left), first diagnosed with lupus in 2013, went on to release four studio albums since, with the fifth titled Hope in the works.
>> Alt-pop icon Halsey released a single titled The End in 2022 chronicling her long struggle with Ehlers-Danlos syndrome.
>> Actor Rana Daggubati opened up about his corneal implant in 2013. The star has delivered hits like the Baahubali series and RRR.
