Why we should sometimes turn a silver lining into a looking glass
The advice to always focus on the positive misses the mark
I have a confession: I’ve made some pretty big mistakes in my life. They were never intentional, but they were still harmful. They involved silver linings, overly positive thinking, and a perpetual need to immediately fix things. Does any of this sound familiar? Perhaps you’ve done something similar.
My youngest daughter, Amelia, 11, has a rare, progressive, and overwhelming disease called Friedreich’s ataxia (FA). Yet most of the time, I’ve continued to act and function as if everything is fine.
This trait of mine started in childhood. I grew up in a family that embraced caring relationships and gratitude, which is healthy, and taught me how to put on a brave face in public spaces when needed, which can sometimes be unhealthy. As a result, I embraced these skills and forged headfirst into challenges.
I wanted to sit with those who struggled, care for those who felt lost, and hold space for feelings that were hard. As a social worker, I worked on skill-building, both formally and informally, so that I could stare into the darkness that can be life and hold another person’s hand.
But when it came to facing one of the biggest challenges a parent can face, I folded. Not only did I cave, but I also took others with me.
Downplaying the fear
When Amelia’s health began turning and we had numerous terrifying doctor appointments, I threw out the comment, “At least I have great healthcare.” When the interventions became weekly and overwhelming, I minimized them by commenting on my leave bank and understanding employer. When bills started coming in and we were burning through thousands of dollars, I chuckled about having a savings account. When I started to look tired, there was a discussion about how much harder it’d be if I had to take a bus to all of these appointments. Me? At least I had a car.
As people who cared for me watched my journey, they’d follow my lead and remind me of the positive or how much worse it could be. It felt like an effective way for things to not be as frightening as they actually were. Gratitude is important, but glossing over the hard things and focusing only on the positive ones, or how things could be worse, should not be used as a tool to deal with struggle.
Painful calls came from various medical institutions with hard answers — or even scarier, no answers. I would take these calls, dry my tears, and walk into work presentations with a smile, because at least my parents taught me how to pull myself together. I disconnected myself from others and, more dangerously, from myself because of my inability to refrain from painting a silver lining around my pain.
Ten years ago, the Royal Society for the Encouragement of Arts, Manufactures and Commerce created an animated short with a talk delivered by Brené Brown and with animation by Katy Davis. I had used this short in training sessions with providers who would go on to work with children affected by the child welfare system. It was supposed to help them be aware of building empathy, which cannot be accomplished when we do not hold space for someone else’s pain.
While watching it for maybe the 20th time, I realized I was doing things wrong — not with others, but with myself. Once again, the coin had flipped. I was the client, and I needed to recalibrate my mindset.
I love my daughter and the life we’ve built. I care for this FA community more than I thought possible. The journey is hard and overwhelming, and sometimes I feel it’s more than I can manage. This truth is scary. But if I pull down my silver lining and turn it into a looking glass, it becomes a more useful tool.
By allowing myself to really look at where I am and hold space for all the things this life brings, I can truly see and value myself more. I see the duality of the strength I carry along with the fear; the deep love I have that keeps me going; and the weight that pulls me down. It allows authentic dialogue, both internally and with those in my support network. It does not mean I’ll stay in this space, but I can’t step out of hard places I don’t acknowledge.
Let’s take that step together, because I see you, too.
If you are interested in engaging in authentic dialogue around life with FA, please consider registering for a panel discussion on Nov. 1, sponsored by BioNews, the parent company of this website, and Friedreich’s Ataxia News. Or connect with the Friedreich’s Ataxia Research Alliance community and engage in several of their upcoming events.
Note: Friedreich’s Ataxia 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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