Like a Kintsugi Bowl, I Am Treasure Despite the Cracks

Suzanne DePaolis avatar

by Suzanne DePaolis |

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Kintsugi, diagnosis, prednisone, Rare Disease Day, pharmacists

As I was walking around my house today looking at all the accumulated dust bunnies and housework I need to do, I came across my husband’s treasured Kintsugi bowl, and it made me think.

In Japan, instead of throwing out broken and battered pottery, the art of Kintsugi is practiced. A broken bowl is glued back together with urushi lacquer and gold powder. The pottery can then be honored for its history and all it has been through, rather than be discarded and forgotten.

I am married to a wonderful man who has not in any way thought of me as broken, even though I have eosinophilic granulomatosis with polyangiitis (EGPA). He has always treated me with respect and never allowed me to use my chronic illness as an excuse for not enjoying life. He treasures our time together. I can be very judgmental of myself, yet he always sees my golden shine.

EGPA has broken my body. I have taken cyclophosphamide, rituximab, methotrexate, azathioprine, mycophenolate mofetil, corticosteroids, and other treatments to repair it. These harsh medications have glued my body back together like the toxic urushi lacquer used to piece together Kintsugi ceramic. I have read the long list of side effects from the drugs I take. They can be overwhelming and scary, but I take them knowing that they allow me to live another day.

My husband’s treasured Kintsugi bowl from Kyoto, Japan. If you look closely, you will see the line of gold where the repair took place. (Photo by Suzanne DePaolis)

Like the natural gold powder mixture painted on the outermost surface, I have painted my top layer with a smile, a positive attitude, and a willingness to not give up. Although I realize it takes toxic substances to hold me together, I am still shining through my golden layer for the world to see that I am surviving.

We are taught through Kintsugi to celebrate breakage and repair as part of an object’s history. All of my medications and treatments are a unique piece of my past.

I remember my first cyclophosphamide pill. I cried as I took it, knowing that I would probably lose most of my long, blond hair. Methotrexate injections made me a sudden expert at self-injecting and throwing up afterward. I learned all about steroids through my use of prednisone, and my family knew about avoiding me if I was on high doses. The hope and promise of rituximab were overcast by its black box warning, and realizing that I was eliminating all of my B-cells.

I have learned not to discard or ignore all of the medications I have tried. Instead, it’s time to celebrate all I have been through and treasure what I have become.

To my husband, I am a Kintsugi bowl. He treasures my history. He knows I have been broken and may break again. He realizes I may be held together by toxins, but all he sees is the beauty of my golden aura. I am proud to be his Kintsugi bowl.


Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.


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