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  • Writer's pictureAnne Mason

On The Gift of Visibility

I opened my mailbox the other day to find a small package containing a handmade card and a light paperback: Single Handedly: Learning to Unhide and Embrace Connection by Ruth Rathblott. Beneath the title, the smiling author rested her chin on a disabled hand, opening displaying her limb difference to all who picked up the book. A friend of mine had met the author at a women's empowerment conference earlier this year and thought of me. As such, she sent me Ruth’s book as an end-of-year gift.

I sat down on my couch and cracked the cover. Inside was the author’s journey of self-discovery and unhiding. Looking objectively at the book’s mission to help others embrace disability and create supportive and inclusive communities, it’s easy to recognize the beautiful altruism of its goals. But, I have to admit, I experienced a gut response of guarded deflection when first scanning the cover.

I spent the greater half of the last decade masking my MS - an act that can be fairly easy to accomplish. For the most part, Multiple Sclerosis is a stealth agent. It wreaks its havoc on the nerve cells of the brain, often beginning with invisible symptoms. Physical sensations are altered, cognitive capabilities are muddled, vision blurs, bladders leak… but all can appear hunky-dory to the unknowing eye. As someone who greatly sought labels like “capable” and “independent,” the unseen element of MS helped me present as “normal.” I kept my lips sealed and dealt with the daily neurological infringements in silence.

My pride lay intact. And it was exhausting. I felt like I was living a half-life, but I was still terrified of owning my condition or speaking openly about it. And, truth be told, I was still resentful to have the disease in the first place. So my efforts to lift the veil started small, occasionally and off-handedly mentioning that I had Multiple Sclerosis. The common response? An emphatic “I never would have known by looking at you!” And while I knew the words intended to encourage, I instead experienced pangs of rage. Didn’t they know? It didn’t matter how I looked on the outside. Battles were still clashing inside of me. But, not wanting to be rude, I would offer a curt word of thanks and then change the subject. “Disability” was an ugly label, and I was not ready to integrate it into my identity.

I then spent copious hours in therapy to work through my prejudices and biases. The more we explored the dark depths of my psyche, the more I knew that I needed to find a way to own my illness - or, more aptly, to no longer allow the MS to own me. Fortunately, I had a ripe opportunity to test out a disability-integrated identity as a member of a new professional development cohort. If I was upfront and honest about my disease from the get-go, I could meet my full, true self through the process of building new relationships with others.

So there I found myself, in a room full of ridiculously impressive individuals, with my heart pounding a million miles a minute, at an identity crossroads. We had just engaged in a small group exercise that explored vulnerability, and now had the opportunity to share insights with the entire class. If ever there was a time to remove the mask, this was it. So I took all of that energy that had been used to fortify my external walls, and directed it inward towards the oppressive waves of fear and insecurity. I raised my hand, stood to speak, and opened my mouth. I don’t recall what exactly I said, or how I said it. I’m not sure how much my breath caught or when the tears started trailing down my cheeks. All I know is that, over the course of 90 eternally long seconds, I had boldly spoken a hidden truth about myself, sending it outward for the world to see.

It. Was. Terrifying.

And then it wasn't. Because these amazing humans met me with love and support. Through further interactions, they asked questions about my MS and about all other facets of my life. They learned who I was in totality: a rounded, complex human being who has hopes, dreams, accomplishments, and, yeah, a chronic illness. I let them see me, and they responded with love and respect. Through it all, I began to cultivate a holistic view of myself; to marvel at my strength, to laugh at my shortcomings, to love my contributions on this earth. Being seen - truly, fully seen - and not just accepted, but respected, is the greatest gift I have ever received.

So, yes, a first scan of this gifted book about embracing disability sparked an unintended and impulsive response of ire. Followed by an earnest inhale, a gracious exhale, and an open acknowledgement of experienced strife. Living with a chronic illness is hard. Living with the burden of hiding that illness is harder. I am forever grateful to those who gave me the courage to step forth as my full, true self - including the dear friend who sent me Ruth’s book. I earnestly look forward to learning of her self-acceptance journey - and to the quiet moments of reflection in which I can recognize how far I’ve come, and in which I can explore what exceptional discoveries lay ahead.


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