Embracing the circle of life on the anniversary of my hardest goodbye

“Oh yes, the past can hurt. But from the way I see it, you can either run from it or learn from it.” — Rafiki in “The Lion King”

In October 2018, I prepared to embark on a new chapter in my life with hypoparathyroidism, armed with a journal that bore the simple yet profound words “I am grateful.” This journal, a symbol of unwavering determination, was to document my journey of resilience in the face of adversity.

I was eager to meet endocrinologist Mishaela Rubin at Columbia University in New York City before heading to the 2018 Hypoparathyroidism Association Conference in Chicago. It was a significant step for me: In 20 years of living with hypopara, I’d never met anyone with the same diagnosis. It was the perfect opportunity to write in my journal.

On Oct. 8, my sister and I flew from Florida to New York. She would come with me to see Rubin, as I needed support. I was weak, still recovering from a life-altering calcium crisis in 2016, which led to a period of intense health challenges that tested my resilience.

But because it was also her 50th birthday, I planned an epic trip: “Live with Andy Cohen,” the Broadway play “Come From Away,” a visit to the salon, all followed by a photo shoot in Central Park with a professional photographer to document our special sister time. This was the perfect way to celebrate her milestone birthday!

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On Oct. 9, we awoke planning to see Rubin, but life had other plans. We received word that our dad was sick and immediately flew home. Dad held on until we arrived. I never would have been able to take that call on my own. I am grateful I was with my sister, who stood by my side and offered unwavering support. Everything happens as it should, but losing my dad was the hardest goodbye.

Despite canceling my appointment with Rubin and my trip to Chicago, and facing declining health, I remained determined. The journal I had bought to document this new chapter of my life remained untouched, but I was ready to face whatever came next. Life couldn’t get worse, I thought. But just a few months after my dad passed, my husband left. Being lost, sick, and alone was a major test of my resilience.

Letter to Daddy

Seven years after my father passed away, I finally wrote in that journal. A lot has changed since that fateful trip to New York in 2018, but I try every day to make my father proud. This journey of transformation and growth, though challenging, has filled me with hope and enabled me to embrace the circle of life.

If I could write a letter to my dad, I would tell him about the milestones from the past seven years:

Dear Daddy,

Since you left, my life has changed forever. I know you are watching and guiding me. I finally attended my first hypopara conference in 2019. I became patient No. 1 in the Phase 2 clinical trial for what is now Yorvipath (palopegteriparatide), and the first injection helped me to finally recover from my calcium crash. I was a board member for the Hypoparathyroidism Association. I’ve published my story and shared it with the U.S. Food and Drug Administration and at a listening session for Ascendis Pharma. I started writing a weekly column for Hypoparathyroidism News, titled “Brave Butterfly.” I have persevered through the most challenging days and stand stronger and wiser for it. I have spread my wings to make a difference. I hope always to make you proud. Those butterflies I see are from you! 

Love, Bari

My father taught me many things, but the most valuable were to never give up, and that worrying is a waste of time.

Today, I am writing this column from the International Hypoparathyroidism Conference in Grapevine, Texas, where I’m surrounded by the brightest minds in the hypopara world. I’m thankful for the researchers who invest in us and the new friends who have made this conference fun!

I am grateful to share what I’ve learned on this journey. Life is hard sometimes, and adding hypopara on top makes me want to scream. But with emerging treatments on the horizon, there is hope. Hope for a better today. A better tomorrow. A better forever.

I can’t change the past, even if it changed me — but I can embrace the changes as a brave butterfly, knowing everything happens the way it should. I am so glad I didn’t give up and persevered in my dad’s memory. As my quote above is from “The Lion King,” I find it fitting to acknowledge the circle of life. As I reflect on my life seven years ago and consider where I’m at today, I look forward to seeing where I’ll be in another seven years.

Note: Hypoparathyroidism News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.