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Home News I see my mom’s transplant journey in Amy Silverstein’s writing | When friends guide the way through the dark days of transplant

I see my mom’s transplant journey in Amy Silverstein’s writing | When friends guide the way through the dark days of transplant

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In May, my mom, Holly, told me about a memoir she’d just finished reading by Amy Silverstein, a writer who had died of cancer the previous day. Silverstein attributed her impending death to a 35-year reliance on transplant-related medications following a heart transplant at age 25 and a second one at age 50.

Silverstein’s legacy is one of advocacy in pursuit of improved quality of life and greater longevity for transplant patients. Until her death on May 5 at age 59, she encouraged patients to pick up her torch and share their #truthintransplant.

In her second memoir, “My Glory Was I Had Such Friends,” published in 2017, Silverstein wrote about deciding whether to have a second heart transplant. Her first transplanted heart had developed vasculopathy and was quickly failing.

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The book is an intimate and honest account of the months between her first troubling vasculopathy symptoms and her second heart transplant. Silverstein spent over two months in a California hospital waiting for a donor match.

My mom also spent over two months in a California hospital waiting for a match for donor lungs.

Silverstein’s hospitalization that time was punctuated by painful interjections from a pacemaker she hadn’t wanted in the first place. Her friends were by her side during each episode as her heart tried again and again to stop beating.

Interspersed with the pain were moments of despair tempered by levity, laughter, honesty, and love. She expressed a desire for her experience to be truly understood by others — and that experience sometimes took a toll on her closest relationships.

Things were pretty dark for her at the time. The odds of a donor appearing that fulfilled complicated biological and medical factors were small.

All the while, Silverstein’s friends continued to show up. Over and over again they flew across the country from their homes in New York to accompany her during that second transplant journey. She never spent a night alone. To me, at the heart of the memoir — pun intended — are the friendships that kept her alive until a new heart was found.

My mom recognized this truth as similar to her own. The people who showed up kept her going.

Not everyone is willing or able to walk into the darkness like that. Sometimes time or circumstance, fear of the unknown, or even fear of the known keeps us from showing up.

I believe we all do the best we can when the darkness creeps in. I don’t believe there’s shame in staying home. But what stands out to me about Silverstein’s — and my mom’s — story are the people who faced the darkness and bravely stepped forward.

Notes and acknowledgements

After I visited my parents over the summer, my mom’s copy of Silverstein’s book appeared in my luggage, filled with margin notes and written sighs of recognition. A note on the flyleaf explained that my mom wished for the book to travel between the three women who had showed up for her over and over again. She hoped we would read it, write our own notes, and share in the glory of being such close friends to my mom during her lung transplant.

I waited until I had returned home to Hawaii to read it privately. I devoured it, staying up into the wee hours of the night. I remember commenting that, “Yes, I know. Yes, that is exactly how it was. Yes, I am so sad for what we went through. Yes, I am so grateful for all of it.” Silverstein’s words prompted memories of experiences and feelings we’d all had.

More than anything, I often pictured myself in those eternal, disorienting ICU days feeling riveted by the human connection — from the conversations I had with my mom, which required lip reading and whiteboards because Mom’s words couldn’t get past a tracheostomy.

I was terrified much of the time while we waited for my mom’s transplant. Even afterward, when things didn’t go smoothly, it was harrowing. But it was also awesome in the truest sense of the word. The humanity that filled the room while death waited at the door was powerful.

It was an honor and a privilege to be one of my mom’s glorious friends during that time, along with my aunt Shari and my mom’s best friend from childhood, Jan, who traveled several times from Texas to tread the halls of the ICU, holding my mom’s hand. What a gift.

As Silverstein wrote, “I want to absorb these words, remember them. The honesty of this moment whirs toward me — bright, forceful, nearly blinding. This is once-in-a-lifetime, Amy. Open your eyes.”

Note: Pulmonary Fibrosis 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 other 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 Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

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