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When You Share the Same Rare Disease as Celine Dion

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This year is my 25th wedding anniversary, and it also just happens to be the 25th anniversary of Celine Dion’s multiple award-winning song “My Heart Will Go On,” from the movie “Titanic,” the first official date night song and movie my husband and I shared. The night we both knew without a single doubt we were in love, the kind of love that fears nothing and is unconditional. Love that is joyful, fierce and true, the rarest treasure in the world.

The discovery of the love of my life is not the only coincidence I share with Ms. Dion.
We could not know at the time of this first date that I would be diagnosed with the rarest form of stiff person syndrome (SPS) after a 23 year diagnostic odyssey; the same rare, currently-without-a-cure neurological disease Celine Dion also would announce her diagnosis with late last year. Her courageous announcement of her stiff person syndrome diagnosis that forced her to cancel her sold out worldwide concert tour and continues to force cancellations of previously scheduled performance commitments is something I admire at a literal cellular level.

Images from Celine Dion's social accounts marking "My Heart Will Go On" 25th anniversary and release of "Love Again" movie

I thought all we’d ever share is her gorgeous music and belief in the mighty power of true love. I never thought we would share stiff person syndrome and the warrior spirit you must embody to fight such an insidious rare disease as well as the fight for some medical relief and attention. Of course, this diagnosis means you have to explain why you have no choice but to cancel the previous expectations others had of you as well as those you had of yourself.

Intractable muscular rigidity, seizing, and acute pain are just some of the relentless agonies of stiff person syndrome we share. I know the hopes that medical specialists out there may be able to grant us some healing, some alleviation of these debilitating aspects. They can be horridly beastly and disabling.

My husband and I empathize with Ms. Dion as we continue to locate effective medical care and relief for my progressive, incurable stiff person syndrome debilitation. Nearly every week a new and unbelievably difficult symptom arrives for my husband and I to try to navigate and accept mostly all on our own.

As Celine Dion sung about in our very first date together, our love and dedication to one another means my husband and I love each other even more fiercely through the most difficult and downright near impossible circumstances. These things happen to be the cruel and courage-demanding challenges of stiff person syndrome.

Our 25th wedding anniversary this year illuminates our holding on to our love and timeless commitment which we live to the fullest, particularly when my husband holds me as I spasm, begin to fall when I start to walk, begin to faint, and especially when I scream out loud in the painful slam of a body-wide prolonged muscular seize.

Celine Dion’s music just happens to be our own unique marriage music in which we’ve found solace and strength these 25 years, most strikingly to us in this year, when Ms. Dion now is also diagnosed with my rare disease of stiff person syndrome and shared her own intrepid start into medical help as the daily demand requiring most if not nearly all of your time. Life changes. Love does not. The love you need for and from those who love you most; the love you must cultivate for yourself in order to survive what is stiff person syndrome.

My husband, Devin, is one of the few people who truly knows and lives my daily SPS progression. We build resilience through the most difficult and unknown of times together.

You better believe Celine Dion’s music plays throughout our days as we fight on and continue to share laughter, joy, friendship, even through devastation and dread.

To all fellow stiff person syndrome warriors, hold tight and keep fighting for yourself and all you love.

To Ms. Dion, thank you for sharing your stiff person syndrome reality and for leading me to my true love of 25 years and beyond. My husband and I are so grateful to you for bringing us together, helping to keep us together, and for sharing your SPS truth, as do we.

Poster for "Love Again" movie

Thank you for making the film “Love Again” with actors Sam Heughan and Priyanka Chopra Jones released in May of this year. Even during the height of the pandemic, you found an ingenious way of filming scenes with these actors in different locations. Ms. Dion, you continue to persevere not only in your work, but also in bringing people together with stories of love and never giving up on love, even when all of the odds seem stacked against you.

To my husband, my soulmate, I would not breathe without you. Thank you for your selfless and ferocious devotion to me as I endure my own warrior’s relentless journey that weaves into our amazing life journey together. Happy 25th anniversary, my miracle! I love you forever. You are my heart.

Image via contributor

Originally published: June 22, 2023
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