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A table with a lap top, blue PSC Partners mug, a pen, and a pad of lined paper


Why me?  Unlike most of you who post on our PSC Closed Facebook group, I am not a young parent nor a millennial. I am a sixty-six-year-old grandmother.

Until November 2015, I had been enjoying life as a retired special education teacher who was also (and still is) working part-time as a registered nurse. With my husband of almost forty-five years, we raised two wonderful children who are now married with children of their own. We travelled, took classes, went to the theatre, volunteered, babysat — and we still do these very same things day after day. However, one thing did change with the arrival of these three little letters we all know too well, three little devastating letters that had the power to instantly change my life.

Little did I know in 2010 where my abnormal liver function levels would take me. I was given respite from a PSC diagnosis for another five years. The removal of my gallbladder filled with gallstones brought complete relief. Once the surgery was over, all went back to normal.

Then… in the spring of 2015 I was faced with high liver function levels again. Evaluations resulted in dead ends and led to more evaluations by a hepatologist who finally uttered the three mystery letters: PSC. No one in my family, none of my friends, not even most of my doctors had ever heard of PSC. I was grateful that my primary doctor miraculously had.

Devastation, terror and solitude followed until I discovered PSC Partners a few weeks later. Ricky Safer and the support of the rest of the community proved to be priceless.

It took me a while to understand my own feelings. On Facebook, young parents were expressing devastation over their children’s pain, and young moms with PSC were describing their enormous fear of not being able to care for their children. I read their posts and heard their cries and empathized and despaired with them. I didn’t understand where my own fears could fit.

Where was my place as a grandmother with grown children? Very reluctantly, I posted about my feelings. I, too, had similar fears. I, too, was fighting my own internal battle. The context may have been different, but the fears were the same.

This realization brought a sense of huge gratitude in me. Strangely, I found myself thankful for being the one with PSC — not my husband, not my children, not my grandchildren, not my friends. I am filled with admiration for the parents of children with PSC; I admire the children of PSCers and the spouses of PSCers. I cannot imagine being able to watch someone I love so much having to deal with this condition. I cannot imagine being able to maintain my strength both for my loved one with PSC and for myself. I am in awe of those who do it so successfully for their loved ones. I am grateful to be the one bearing the burden.

I am fortunate that though I am sixty-six, I do not to have any PSC symptoms. My wish for my family and for myself is to continue to remain asymptomatic for many years. Of course, that Sword of Damocles never stops hanging over my head. But I’ve learned that it takes a PSC village to feel unafraid and that it takes the support of people who understand, to travel this incomprehensible journey. I am thankful for having discovered the PSC Partners community and for all the new friends of all ages and different backgrounds who have my back. I hope I can offer similar support to many of you.

Thank you all.


Barbara T.

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