“You never want to be a rarity in medicine or science.” ~ Celine Dion
I recently watched the new documentary, titled “I Am”. It’s a raw and honest, behind the scenes look at Celine Dion’s daily struggles living with her life-altering diagnosis of “Stiff Person Syndrome”, a rare, incurable neurological disorder which affects 1 or 2 in a million people. Twice as many women as men.
Doctors describe it as “muscles rebelling against the body, causing severe spasms. Also, people experience heightened sensitivity to noise, touch, and emotional stress”. ~ I Am
Watching it brought up a lot of emotions for me.
Brain zaps, a heightened sensitivity to noise and touch, blurred vision, muscle spasms in the form of tremors and tics, numbness, shakiness, constant tingling sensations in my hands and feet and a rare, incurable neurological disorder called PGAD, which affects about 1% of women in the world (even more rare in men) continues to torture my body and mind day and night since April 2, 2022; the day I took part in the clinical research trial for Psilocybin.
I can’t begin to fully understand Celine’s own personal journey or feel the distress and suffering that her nervous system has been undergoing for the better part of a decade now, but as I watched, breathless at times, it was hard not to compare my own pain and anguish to that of Celines.
It felt eerily familiar to me at times.
Both of us dealing with a life-altering, incurable, and very rare diagnosis. One that has left doctor after doctor scratching their heads, unable to fix you.
It can feel very hopeless.
Lonely.
Scary.
Frustrating.
Maddening.
My body and mind are in sensory overload right now due to an abundance of stress and anxiety, both of which cause me to have severe, unrelenting, and unbearable flare-ups of my symptoms. And at this point in time, “I Am” out of options.
If you were to ask Rich who my favourite music artist is, he would tell you, without hesitation, it’s Celine Dion. I have dragged him to see her in concert several times (one of the many perks he had during his career with Sony). He did, however, put his foot down, though, when I begged him to see her again while we were in Vegas some 12 yrs ago when she had a residency there at the time.
Celine is a class act.
My idol, hands down.
She is my inspiration.
Determined and strong-willed.
She has repeatedly promised her millions of fans that she will be back on stage performing one day, whatever it takes, and now it may be even sooner than expected, as rumour has it, she could be back, centre stage as soon as tomorrow, performing at the opening Olympic ceremonies in Paris.
You can be rest-assured I will be watching, cheering her on.
Most likely with tears of joy in my eyes and hope in my heart.
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YouAreEnough 