Under the surface, looking with purpose, you will notice with a focused eye, my sorrow. It’s hard to see, camouflaged by a smile, tucked behind the disguise of normalcy as I quietly work to manipulate a facade of good health, desperate to maintain life as I once knew it, life before sarcoidosis changed everything.
Once a foolishly confident person, naively joyful in my ignorant bliss of feeling well, I took my easy happiness for granted. How could I have known the train was about to derail? How could I have foreseen the way this disease was going to rob me blind, stealing not just my good health but also my peace of mind, my sense of order and control?
The ease by which I once lived has been taken from me. Sarcoidosis has made everything I do, think, say and feel more difficult. My body is pained, my mind mudded, thick and slow. I mourn the girl I used to be. She has been lost, forever altered… just another casualty of chronic disease. When you look beyond my highlighted hair, my designer outfit, my matching shoes and sun tanned face, you will see it, the brokenness, the grief, the heartache and the loss that consumes the hidden reality of my life.
It is always there, lurking just beyond the bounds of the monotony of my current existence, so much lost to this disease, so much taken. It’s not all of me but it is a very real part of me, of who I have become because of my disease. I don’t allow myself to be swept up in this sorrowful brokenness but from time to time, it seeps through the cracks in my well warn armor. There’s no denying it, that I’m tired from this war that I wage. The battle for normalcy is a daily fight. But, fight I must and fight I will because I’ve lost too much already and I cannot stand the thought of losing more.
So yes, if you look with a careful eye, you can see the sadness and the sorrow blanketed by my shear determination to regain some of that happy ease, some of that peaceful bliss. It will never be a naive joy again. It will never be innocent again because I am no longer gullible, unsuspecting and foolish in my quest for serenity. No, now I am a tired warrior but I understand the battle and despite the cracks, the soft spots and my leaking sorrow, I am strong and I will wage on.