With the madness of living with my various conditions comes a hardened wisdom. The blissful ignorance is ripped away, screaming and gasping, throne under a light so bright that it’s painful to dare to ever look upon. Eyes are gripped wide open by crippled hands, unable to turn away from the suffering that is flooding up from within my body. It’s coming from inside and it cannot let go of me. It’s destroying me from inside. I can’t go anywhere, stuck in the suffering pit of disease. It is unfair. I hate it. I hate that I had to learn this at all. At the age of 15-16, where one is to gaze upon the future with hope and excitement, I was curled up in a ball on my bed, bawling my eyes out from the constant inflamed pain and its disabling uncertainty. I wanted to give up so much. I did not want to live with it. I did not want to have to learn how to live with it. I wanted to escape, fade away in my sleep deep into the quiet night, forever free of the consequences of my disease.
I considered suicide. But that doesn’t come free. It has its own set of consequences, no true escape. So I cried my heart out with regularity. I called out to the heavens and condemned them any time I spent home alone. Why do I have to be dealing with a disease at my youthful age that essentially renders me an elderly cripple? It’s not right and it’s not fair. I wanted to retain the blissful ignorance of the good health I’d always had and that so many others got to keep, circling outside and around me in their own bodies. I did not choose this. Why did it have to choose me? I existed on the surface of things, hopelessly devoted to trying not to care anymore. But it’s hard to not care when there is a level of pain constantly knocking at your daily existence. I held no hope for my future plans, simply waiting for time to run out, wasting everything on doing nothing.
At that time, I felt the future was not possible. My health was nothing. Hope? Just enough to keep me from following through on killing myself but too little to survive and thrive on. On some level, I knew I couldn’t end it. Whispers from some past span where promises of “never again” were sworn came swirling out from the darkest corner of my despair. The impression of the first attempt being too late scared me from daring to jump that deep into my depressed abyss. So I laid in bed, quietly sobbing late at night. I consoled myself with music, songs such as “Word on a Wing”, “All the Madmen”, “Rock N Roll Suicide” and “Life on Mars?” nudging me to keep breathing through the sobs. It was all I could find to keep me going. It was enough to hold on.
Twenty years later, I’m here. I’m here despite the so-called invisible damage of my disease. On the surface, my health and youth likely appears rather perfect. On the surface, I appear put together; hair, makeup, skin, and style. Of course, I’m the gal with proper gloves on as I wander this world. You can’t expect me to go out all a mess nor in pj’s or sweats. I have to look as well as possible. Because underneath the surface of my skin, my body is damaged and crooked from this “invisible” disease. At a glance, you won’t see it. Gloves on, you won’t see disease in my hands. I see my twisted fingers and gnarly knuckles every day. I feel it every day, to varying degrees of severity. I feel it in physical pain. I feel it in emotional pain, as I stand staring into the mirror, seeing mid-30’s while feeling 80’s.
My youth and my health are imperfect. They will never ever be as perfect as one hopes it to be for any child they bring into this world. My body, my joints are crooked. But my red lipstick will be applied perfectly straight. I want to pretend that I’m all together, in good health. Living despite my disease is a heavy burden to live with, so much pretending, pushing myself to keep going even though I’m tired and I ache. I want to be just like you, with good health, no crippling threats daring to drop from puppet strings hovering above. I want to grow old. Problem is, parts of this body already behave as though they are! So I wear my sunscreen, apply my wrinkle creams, pat on some powder, fill in my brows, swipe on some bright lipstick as I tell myself I can’t let this disease stop me. I wish I truly was that smartened up facade that exists in my mirror reflection. I want to be a swell gal with gloves, perhaps someone for others, far more healthy than myself, to envy. Truth is, I envy them for their gloveless perfection.