Glanding Along And BOOM
How do I spell my disease? Fucked; emotionally, financially, physically and mentally, ongoing blows to my face reminding me that I have Graves’ disease and Graves Opthalmopathy. No matter what I do, my lover dedicatedly serves unspeakable shame, paralyzing guilt and systemic fear.
I don’t commit easily. Marriage is off the table. Weddings make my gums itch, my knees weak and gift me with hives; yet I was forced to commit to Graves’ without my consent. Traversing through the loins of my family and skipping a generation, came Graves’.
Mired in denial, incapable of admitting that I had a disease, or uttering it aloud to someone with a pulse for 2-years, I took up residence in a self created thyloset (thyroid closet); even though I’ve had this disease for 10-years, I was diagnosed in 07′ after multiple misdiagnoses and mistreatment, and of course, mistreatment post diagnosis. Worse, I still can’t tell people in my “Other lifeÃ¢â‚¬ about it. I don’t know how to. I can’t find the words. I’m not yet ready to field questions with articulate answers. Shit, I can’t even finish a fucking essay about it.
My mind and body morphed into an unrecognizable stranger, so yes, I felt like a monster. I went from 145 pounds and a devotee of outdoor exercise, to an obese, unfit, freak of nature (or so I felt, feel?), with crazy swollen eyelids. From 20/20 vision to I’m fucking blind, viewing the world through a murky, unkempt aquarium. I couldn’t recognize anyone, though they were standing less than a foot away from me.
Undiagnosed and with no knowledge of what a thyroid was, much less its whereabouts in my body (it could’ve been in my vagina for all I knew), and even less knowledge about the power of the mighty gland, a gland, seriously?, life as I knew it was forever changing, and did change.
Post diagnosis, I got sicker. I became thyroid psychotic (mental illness in my family is a punch line, not an option for diagnosis), thyrotoxic, and had multiple thyroid storms. On the precipice of death, but too insane to realize it, my mother and my sister staged an intervention to save my life. Guilt aside, I would have been dead 3-4 weeks later otherwise.
How do I learn to live side-by-side with that and accept it?
How do I forgive the doctors who mistreated me, misdiagnosed me, and lied to my face, assuring me that I was fine and there was no cause for concern, though my life was being derailed? How do I begin to forgive when so much of my time was lost to a disease I couldn’t control? I lost time with my family and friends. I lost time to flourish as a person and in my career. Upon diagnosis, my insurance company dropped me, to the tune of 24-hours later. This, I should forgive? Am I expected to forgive the medical debt I have, and continue to incur, to treat and manage a disease I never RSVP’d for? The stack of medical bills laying in wait won’t, why should I?
I am angry. Life isn’t fairÃ¢â‚¬”I get it. I see a psychiatrist (shrinktail) once a week because I am committed to finding my way back to myself. The business of disease, and disease giving me the business isn’t easy, none of it is. , The one change I’ve made, is that I no longer say “How do I begin to forgive myselfÃ¢â‚¬. Progress, to be sure. Still. It’s not enough.
I never wanted to be a bride or to be married, but here I am; the bride of Graves’, shacked up to a ball and chain I loathe with every ounce of my being.
To this day, I can’t spin my entire thybacle, as mentioned. However, at the many heights of my disease, I wrote numerous hate letters to my thyroid, beginning with Dear Thyroid. I founded DearThyroid.org, a place for fellow patients with thyroid diseases and thyroid cancers to write letters to and from their thyroids, among other literary things.
I believe in the power of the written word. I believe there is strength in numbers. I believe that we can achieve healing through camaraderie. I believe we all have the power to invoke change if we’re willing to do the work. However, while doing that work, knowing that there is a place to go and a community to celebrate my successes and catch me when I fall, well that’s just fabulous. Eventually, in time, I’ll get there, wherever there is.
Even if I can’t file for divorce, at least I can practice thylygamy.
*Patients for a Moment Blog Carnival hosted by Chronic Babe (love this dame, she’s committed to giving chronic illness a beautiful, unique lifestyle, very healing).