Thursday, August 22, 2019

The masks special needs parents wear—sound familiar?

I just finished a powerful new book, The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver by Donna Thomson and Zachary White. I've followed Donna for years; she has an adult son with cerebral palsy, Nicholas, and I've found her writing inspirational, helpful and very relatable. The book is the same; it's a hyper-honest look at what it's like to be a caregiver, whether for a child, a spouse or a family member, with invaluable reassurances and resources. Donna gave me permission to share the following portions from Chapter 4, which particularly resonated with me. 

The people around us have expectations of us just as we have expectations of them. We are aware of other people's expectations most intensely when we perceive a disconnect between how we feel and what we believe others need from us. In the midst of struggle, we all wear a variety of masks that present the parts of ourselves we believe others want to see and hear.

The "Saint" Mask

Saints seemingly embrace struggle with such elegance that their compassion and endurance are proof that they are otherworldly when coping with suffering. This mask is so admired because it is greeted with awe. Saints are revered but reverence doesn't necessary equal understanding.

Appreciation happens from afar, but it doesn't require others to step toward caregivers. Instead, others are encouraged to remain comfortably distant, placing those wearing the saint mask on a pedestal, rationalizing their distance with an awareness that caregivers are so different because of their unyielding willingness and compassion: "I can't believe you are doing so much." "I couldn't endure what you experience every day." "I don't know how you do it. I'm too emotional." This praise, though appreciated, also situates caregivers as different, distinct, and even aberrant because they're engaged in something that is believed to be extraordinary. The mask traps its wearers into adhering to what others want to believe about them, implying that saints don't need to be listened to or learned about because, after all, they're saints—not people.

The "Everything is OK" Mask

This mask allows others to feel comfortable knowing that life, however challenging, is still within control. Despite what is happening, everything is presented as okay so that people around you will not have to contemplate what might happen if life doesn't return to normal or if parts of life don't always fit within the category of "okayness."

This mask can feel uncomfortable, and even smothering at times, because authenticity is sacrificed at the expense of others' needs. Since the wearers of this mask devote unending attention and effort to maintaining the appearance of normality, other people are not invited to appreciate how a caregiver can be positive and still devastated, coping and still overwhelmed, a totally different person and still the same person.

The "Fighter" Mask

The fighter mask conforms to the belief that all challenges can be overcome if the wearer has an absolute and unwavering desire to fight at all costs. When every conversation is about a cure, or a possible cure, this mask denies wearers the possibility of exploring life between "battles"—if only for a moment—because there is always something that needs to be done and some war that needs to be initiated.

Since other people demand hope at all times, the fighter mask excludes possibilities for sharing about nonfighting care experiences like intimacy, fragility and moments of peace. Deviations are often greeted with bewilderment and disbelief: "There's got to be something you can do, right?"   

All of these masks highlight that caregivers aren't simply shaped by their care experiences. Rather, the people around them—family, friends and colleagues—also determine what is (in)appropriate to think, perform, and share about their care experience. In the process of interacting with others, caregivers, like other stigmatized identities, may feel compelled to perform, act, and respond in ways that interrupt possibilities for authentic and satisfying social support.

Donna is also the author of the parenting memoir The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving. Her coauthor, Zachary White, blogs at The Unprepared CaregiverAlso check out Donna's guest post: 5 secrets of special needs parent happiness. 

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Thanks for sharing!

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