In One Statement, My Dad Revealed Why It's OK to Be Open About My Chronic Illness Battle
My dad told me something quite startling a few years ago and I haven’t been able to forget it.
He looked at me as we were getting in the car for the hundredth time that day to run to yet another errand and quietly said, “Sometimes I think about how you feel. How you are really feeling behind your smile and your brave words.” He squeezed my hand and off we went. I sat there in silence, too tired to think of a reply.
I wanted to shout to anyone who could hear me, “If only you knew, if you honestly knew!”
My father will (prayerfully) never know the measured toll chronic illness takes. How it robs the body and sometimes the heart of so many chances, of so much happiness. How each day I wake feeling less and less of a woman with purpose as I drag my body from bed after a pain-filled, restless night that brought no sense of refreshment or escape from an unrelenting fatigue. He will never know the mental anguish of watching your friends and loved ones live life around you as you can only dream of.
And yet, there is a life to be lived, in spite of it all, one brimming with purpose.
In one tender, unexpected moment, my father gave me the grace to be vulnerable and raw, to be reminded that those who love me best know there is so much more to the battle than what is seen, than what I choose to reveal.
For me, it is a difficult thing to contemplate. I have survived and coped for so long by not dwelling on how I really feel, that to do so now, makes me feel as though my whole world would unravel.
With one simple statement, he pulled on the fraying fabric that I have worked so hard to keep tightly knit. I used to think showing my “fray” equated to my weakness, to a despised depiction of the broken shell of the woman I have become. But I am slowly learning that real strength comes in showing your tears and fray and allowing others the chance to help you mend.
There is undeniable beauty in brokenness, if only we allow its entrance.
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Rebekah Dorr is 27 years old and has myasthenia gravis along with nine other rare disorders. She has struggled with her health since she was 19 and while it has changed her, she refuses to let it defeat her. She and her father co-lead a local support group for myasthenia gravis and she is an active member in the community, and as an advocate on her international support page, Myasthenia Gravis Unmasked. She is passionate about the beauty of unveiling and of using vulnerability as a gift so that others may find courage and solidarity in your story.
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