I’m challenged to experience life fully as part of my mental health

Managers, directors, and administrators are always discussing methods of inspiring high engagement among workers. Studies suggest that highly engaged employees are good for a company’s culture. Such employees are invested in their company’s goals, demonstrate good productivity, and are just good for business.

However, I often wonder if some of us are so focused on producing what others expect that we forget to consider what we ourselves want out of our lives. Our employers care about our output, which affects the company’s bottom line, but what about the output that’s personally important to each of us? Are we each actively building our lives toward something we care about? Are there specific things we can each think about that keep us tethered and invested in life?

This idea crawled inside my head and has been challenging me ever since a recent reread of the memoir “When Breath Becomes Air” by Paul Kalanithi. He was a neurosurgeon who reconsidered his values and priorities after discovering he had stage 4 metastatic lung cancer.

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In the book, he writes about how he and his wife weighed the impact of trying to bear a child despite his diagnosis. Considering the likelihood of his worsening health conditions and early death, his wife asks, “Will having a newborn distract from the time we have together? Don’t you think saying goodbye to your child will make your death more painful?”

He asks in response, “Wouldn’t it be great if it did?”

This response struck me because I’d never before considered the merits of a nonstop search for more things to love and cherish. But it’s a lovely proposition that hints at a way of approaching life with purpose and a level of engagement that may be its own reward.

The willingness to live in awe

Approaching life in such a way requires a softened heart and a readiness to find awe in new and unexpected things. It’s a perspective that’s radically different from the kind I often equip myself with to endure everyday tragedies, face to-do lists, and find leisure largely through distraction, not engagement.

However, it’s worth remembering that being long-suffering isn’t always a virtue, and expecting great things is sometimes intrinsically worthwhile.

I imagine many of us with Charcot-Marie-Tooth disease are easily worn down by disappointments, and in response, we disengage from our lives. After all, much of the world isn’t constructed with disabled folks in mind. Many of us face discrimination, deal with anxiety over the future of our physical health, and experience loneliness more frequently than many able-bodied folks.

Yet as tempting as it may be to disengage, I think it’s worth seeking ways to fight this instinct — to feel every experience fully without fear. By doing so, we may be able to invest in ourselves and thrive in the manner we find most meaningful.

Note: Charcot-Marie-Tooth 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 Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.