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By Julia Freifield

I wrote In Each Other’s Bones: A Memoir of Love, Loss, and Living about my role as caregiver in my husband Mark’s battle with Multiple System Atrophy (MSA). Coming out of the recent March MSA Awareness Month, it seems timely to share part of our story through the book excerpt below.

From the book’s chapter “Keeping a Secret”:

As Mark’s health changed, he felt he could take care of his health by himself. He believed he could stay ahead of whatever physical problems were cropping up by being informed and connected to doctors who could help. He made a conscious decision to not burden others. He didn’t want his illness to be the topic of others’ conversations or speculations. It also gave him a feeling of control in his life during a time when he didn’t have control. I respected his decision and obliged. Sometimes, keeping a secret with someone is a bonding experience; two people sharing personal matters can feel intimate.

Yet I felt torn. Who’s secret was it?

I had to remind myself I wasn’t intentionally withholding information. I was guarding Mark’s privacy. My promise to Mark was bigger than my bottled-up feelings of worry and fear. Before we told our children, were they noticing changes in their father? In 2008, while on a family vacation, Emily stumbled upon Mark’s catheters. She didn’t know what they were and didn’t ask any questions. It was years later that she admitted to finding them. Since we held back any explanation, did our children feel betrayed? We raised them to talk things through and tell the truth, but talking about illness and death is tricky. And not everyone is up for those kinds of conversations. I really didn’t know how to talk about what was happening.

I have often been other people’s secret keeper. Friends and strangers have confided in me my whole life. Mark and I didn’t plan on keeping a secret like this for as long as we did. The years crept up on us. Denial is a wonderful thing. It was like a drug I kept trying to swallow. However, by keeping my feelings locked deep inside, I was allowing them to snowball into something larger. Keeping Mark’s secret became harder as every day, every week, every month, things were getting scarier. I was torn between protecting his privacy and releasing my own overburdened emotions. To cope, I began meeting with a therapist. It was the first time I had told anyone what was going on. My therapist and I discussed my need to begin sharing my worries, sadness, and fears with a few select friends.

Shortly after, a friend asked about Mark. I couldn’t pretend anymore. I broke down. Everything poured out of me so fast and strong, I couldn’t stop talking and crying. My sobs were gigantic. Some words describing Mark’s symptoms were so hard to say aloud, I had to whisper them to her. This was the first crack in the dam.

By talking to my therapist and opening myself up to friends, I experienced many difficult yet honest conversations. I was becoming more real with myself and others. My relationships with family and friends deepened and grew, rather than collapsed as I had feared. I was beginning to understand that when we share troubles, we learn the beauty of genuine friendship and are able to make true connections.

Telling our children about the neurological symptoms was the beginning of letting them see me not just as a mother, wife, and caregiver but as a human being moving through life with heartache and happiness. I was showing them it can be done. Initially, keeping the secret was like building a small house that just the two of us squeezed into. Eventually, the small house was expanded, and we gently brought our children into our little world, along with family and close friends. Our commitment to each other as this house grew didn’t waver.

My independent streak needed to soften, because there was no way to get through Mark’s illness alone. By allowing others to see me at my saddest and most vulnerable, I felt connected to others, particularly my children. By removing the barrier I built around myself, I grew.

About Julia Freifeld

A classically trained fine artist, Julia earned her degree from Boston University in painting and printmaking. After studying in Paris, she worked as a scenic artist for Disney Studios in Los Angeles. She now lives in Raleigh, NC. In Each Other’s Bones is available on Amazon, where it reached #1 in Marriage and Family, Grief and Bereavement, and Parkinson’s Disease categories. Learn more at juliafreifeld.com