The body is a wondrous place to live, but when it is faced with a chronic disease it quickly turns into a silent prison.
– A few months ago I got an email from a girl asking if I would be interested in photographing her. I get this kind of request a lot but this one was different. This is her story:
“I am Alana, I suffer from a Chronic Illness that is unfamiliar in the medical world. I have been sick with Chronic Fatigue Syndrome, Dysautonomia, and stealth infections for 5 years. There is not one system in my body that wasn’t affected, my heart and brain the worst.
A real vulnerability comes with being ill, once an independent happy young woman becomes a shadow of her former self carting her medicines, machines and walking aids to doctor’s appointment after appointment, only to be told: “I’m sorry, we just don’t know what is wrong with you.” Hospitals start to feel like your second home without the warmth and love, your dignity is no more and you are tossed around from specialist to specialist all to which you receive the same answer. The body decaying before my eyes, muscles once strong are now wasted and weak, physically the body has changed, you start to feel ugly.
The four walls around you become the only view you see and you watch life pass by from your bed, you lose the sense of human connection and start to spiral into a dark place wishing it would end. You watch from the sidelines as your friends carry on with their busy lives, many you lose contact with as they struggle to understand your illness, after all the doctors struggle to understand, how could I expect anyone else too? The words “what did you do today?” sound like nails down a chalkboard. You see my body won’t take me far; a shower is a luxury, to see the sky, not through a window is a wonderful day, the simple things that people take for granted now become your greatest gifts.
Illness for me has its silver lining though, it has taught me to slow down, enjoy the little things like watching your daughter play silently with her dolls as she mumbles little conversations between her toys. It has taught me to appreciate my loved ones even more as they held my hand and cried with me at my sickest moments. It has taught me what really matters in life, seeing the magic in my daughter’s eyes, breathing in fresh air while feeling the warmth of the sun gently beam across your skin, sharing that infectious belly laughs with your family on a Saturday night while you play board games and watch your loved one cheat, a passing glance with a stranger as they give you a soft smile.
Those are the reasons why I refuse to give up the battle, life is so very precious. I will strive for every breath, for life even with illness can be so very beautiful.”
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