2015

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Well, 2015 sucked.

I had every intention of working to write in this blog last year. And then the day arrived, over and over, of a possibility that will never come to pass. My hopes and dreams blew up in my face and I wanted only to slam the door shut on sharing my words in some lame attempt at coping with my inner despair. Yes, it was that dramatic. If I slam the door shut, lean back against it shut tight, will the pain just go away? I lied to myself all year, convinced it just might. But no, it couldn’t. I allowed myself to suffocate with panic, dread, and anxiety through each step. And then the staircase collapsed from beneath me.

It all began in earnest at the end of December 2014, dragging me on until March 2015 to know for certain the true cost of saving my life in 2002. That was followed by the fantasy of options for the next few months. If I put off pursuing the truth of these options, then I can pretend that the possibility I desire second of all now could still exist. I face that fear in July, tested again in August to be sure, until it became an absolute certainty, solid as a rock stuck in the pit of my throat, choking off that hope in late September. Now I sit grieving, in all its wondrous and various spiraling stages.

Not one moment of this journey was made any easier by the daily experience of everyone else having this hope come true for them, often without trying nor intending to do so. But that’s my own fault, on various levels. For one, my line of work makes it a constant. I flip the switch to become cubicle robot extraordinaire. No past, no story, no bias to judge, a face of stone. To my relief, they seem to know better than to probe. It’s in the quiet moments of work, after they leave or in the morning catch-up of overhearing other workers as they share their delightful stories of family, that I sit there trying to mash all the crumbles into rock. Steady, unconcerned, same as always, just an eyelash stuck in my eye, really.

It didn’t help at all that my panic attack issues and high anxiety levels returned with an unremitting vengeance. I have battled these issues for years now. They worsened through the journey of my cardiac issues, nearly dying, all that. But in the past 5 years, I’ve worked hard to obtain valuable coping skills and mechanisms to work through the anxiety and panic in all its sheer terror. I’ve utilized ongoing medication and had actually worked hard to taper off and no longer require it in order to cope. I utilize the wonderful hypnotherapy programs offered by Michael Mahoney at healthyaudio.com. I’ve utilized the grace of a therapist, ever since I reached a point of despair nearly a year after my 2nd open heart surgery. I couldn’t cope back then, for everything terrified me. Yes, I nearly died. Yes, I survived! But…”what do I do now? How do I live a normal life now?” Ignorance is bliss, but I’d had my heart cut wide open twice at that point. With all of these tools, my perspective shifted around to a better place, one where I didn’t run in sheer panic from every simple daily task of life. For 2015, my therapist regularly reminded me that I am not where I was before; this is a minor setback. That I have the tools I need to continue to cope and regain my footing. And she’s right, slowly but steadily, I can regain my strength and trust in my abilities. And perhaps stop feeling like a failure who isn’t worth it nor capable.

I mention failure, because that’s the heart of the matter. Premature ovarian failure. Now that it’s all over, the doctor visits and testing, I reached a point where I realized I had no choice but to accept it and work to let go of the desperation that fuels any woman who desires to become a mother. At least, a biological mother. We didn’t even really get to try, it was that hopeless. Thus I felt just as hopeless about writing here. I thought if I could just hold it in, I’d be all right. Just put off posting a little longer, hold the grief right in tucked tight. But that’s not how grief works. It spills out in cascades of suffocating sadness, hopelessness, anger, raw horror fueled by loss. It breaks out and floods when you least expect it: In the phone calls from the doctors, with the lab results in hand, in the arms of your spouse, from the swollen red face that peers back from the mirror, in the moments after hearing the news of another’s good fortune, belly full. You stand in support of the news, listening to the happy stories, all while your heart ticks steady inside. It’s a ticking that reminds you of the second chance you’ve been given to this life, restored…and robbed. Robbed of the possibility of ever looking into little bright blue eyes that match your very own.

Perfection

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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.

Gloved Hand on Heart

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Joy to the world, for it is the season of glove-wearing! This means less questioning stares from others as I go about my life with hands swathed in gloves, no matter the temperature, a bright shining sun or a gloomy gray sky. I can feel their stares on those Summer days…”why is she wearing gloves? It’s hot out! Is she nuts? She must be nuts…or just weird.” Then I hear them giggle, feel the stares, giggle, more stares. Their judgment is obvious, unfortunate, and rude. Though I can claim a certain degree of standoffish introverted weirdness, I do not wear gloves due to some unknown level of insanity nor out of some desire to remain socially weird forevermore.

I was not born into the world with gloves upon my then perfect hands. In fact, it was not until my hands collapsed upon themselves by way of debilitating pain and inflammation did the warm and soothing comfort of gloves enter my daily life.

I had suffered since the Fall season of 1994 with symptoms that refused to abate as the days passed, instead worsening steadily to a point of disability. I first noticed that my body did not feel *right* after gym class. I did not bend as easily as I had, post-class. I felt stiffness in motion, resistance within my bones. I shrugged it off as nothing and continued on. By the time I was diagnosed in June of 1995, I felt crippled from the inside out, all over. My body constantly ached, hips, knees, fingers, and any joint in between. My fingers no longer could bend as designed. I could not make a fist. My knuckles and finger joints were distended, inflamed, shining bright and red. My hips and knees locked into formation whenever I sat down. Standing up and attempting to walk left me feeling like some rusted door hinge, refusing to budge open into the light of day. Bit by bit, I became a cripple. I felt doomed. What could have gone wrong with me?

Diagnosis is a double edged sword that will slice right through your heart. On one deformed hand, you finally know what has gone wrong. Relief! But such relief is inherently fleeting. For on the other crippled hand, once you learn about the disease behind the diagnosis, you realize that it’s not going anywhere. It’s real and it’s incurable. It does not care if you are young nor old. It does not care if you have things to do nor figure out about yourself and life. It only cares to destroy your body from the inside out.

At age 16, I was diagnosed with a form of Rheumatoid Arthritis (Polyarticular JIA). RA is an “invisible” auto-immune disease that seeks out any and all joints and soft tissues for destruction through the crippling wonder of inflammation. It holds no consideration for race, age, nor creed. At the time of my diagnosis, I should have been excited; I was signed up to learn how to drive. Crippled by a painful disease and sweating with nerves, my hands were pathetic. Wracked from the constant pain and the anxieties that arise simply in learning to drive, my inflamed and unbending fingers could not grip the wheel. I sat in the driver’s seat, stalled at a simple rite of passage, undermined by my disease.

Ever to the rescue, my Mom dug up an old brown and gold pair of Isotoner driving gloves and passed them onto me. Warmth spread through my fingers, the effort of movement eased just enough to allow me to grasp despite the pain. I gripped the steering wheel already knowing that life had headed off into a daunting direction. At least now, I could take the wheel.

When you see me, a glove-wearing and bespectacled redhead wandering round the area of Southwest Ohio, you can point and laugh at my gloves, mocking me as you do. Just know that beneath the surface of those peculiar gloves are the hands of a survivor who refused to be crippled by an incurable and disabling disease. Would you be as fortunate?