On Love, Impossible Standards, and Being Fully Alive; A Health Update Of Sorts

Me, one year ago this month, April, 2019

A year ago I was in the midst of getting a diagnosis on what was causing the extreme reaction my body was having to anything I ate, along with mostly any beverage besides certain brands of water, coffee, or tea. And it was more than just food that my body was freaked out about -- it was odors, chemicals, temperature changes. It was physical activity and too much sunshine. I reacted to anything and to nothing at all, and it was wildly unpredictable. I spent the majority of the previous year carrying extra clothing, mapping escape routes, and scanning for bathroom signs everywhere I'd go.

By April, this time last year, I had lost a third of my body weight. Slowly at first, and then rapidly cascading. I was below 100 pounds when I finally caught a glimpse of my full naked body in the mirror and saw with horror, an emaciated dying woman staring back at me.

When the body sheds excess fat, we women are conditioned to celebrate. We've gone our entire lives seeing images of scantily clad, underweight women on the racks of grocery store shelves being upheld as an impossible standard of beauty. Fitness magazines featuring beach bound bodies is our measure of good health, and calorie counting is all the math we are really expected to learn.

In the 90s, I was an expert at keeping my diet as close to zero fat a day as possible, regardless of the sugar content. As long as the label said zero fat, it didn't matter. I fed my daughters from the lie of that poison.

We knew the images we were bombarded with weren't possible to achieve, because we were smart women, not the bimbos the world tried so hard to reduce us to. We would need personal chefs & trainers, body sculptors, plastic surgeons, photo shop experts, plenty of money, and even lower self-esteem then society and our family units had already managed to instill in us.

When there is no more fat to eat, the body starts consuming muscle mass, of which, at the point that I caught sight of myself in the mirror that morning, I had very little left. The skin that covered what used to be my back side-my reported best feature, now hung down the back of my legs like heavy drapery in a funeral parlor. And when I sat in the doctors office watching him examine my very frail hands, while pinching the skin that had lost it's elasticity, with a worried look on his face, it confirmed the news I already suspected. This was bad.

There would be no quick fix, take a pill, try a this diet, way out of this one. Not that there ever had been. Chronic illnesses with diagnosis like Lupus, Fibromyalgia, Thyroid Disease, Connective Tissue Disorder, Sjogrens, Raynaunds Syndrome, Lyme Disease, and Mold Toxicity had plagued me my entire adult life. Each new level of disease activity bringing with it a variety of expert opinions ranging from sound medical wisdom, to the very worst experiences with men in white coats, who hid there perversions, contempt, and ego driven personalities, behind the facade and respectable title of MD.

I limped along through 30 years, mismanaging my healthcare and ignoring the worst of my daily symptoms, adjusting to each new level of disease activity the best way I knew how-- by putting on a smiling face and pulling up my big girl panties to prove my worth to others, while hiding punishing degrees of pain & exhaustion that was enough to make a grown man cry.

The diagnosis that came felt like a life sentence. And indeed it was, as the stage of disease activity in the beginning was suspected to be aggressive and came with an average life expectancy of 4 years after diagnosis. The gravity of the doctors tone the day he called with the news, was one of those life moments that seem to replay in slow motion. Listening to him speak, he could have been repeating the lyrics of The Sun Will Come Out Tomorrow, it didn't matter, his tone expressed his sympathies and regret at having to deliver this news.

Later, I stood in front of that mirror again, his words on replay, while I made a thorough examination of each part of my body. People had already been quietly expressing their concern for the dramatic change in my appearance. But the voices that stood out to me the most, were the women who responded with some form of self-deprecating humor about wishing they had my problem, because no amount of dieting, or self-hatred, had given them the relief from their own body shaming.

I decided right then and there, in the midst of believing I was dying, evidence standing in full nakedness before me, that I was done hating my body. I was done hating myself. I was done hating ME.

If you had asked me at any point over the course of the previous 30 years if I hated myself, I would have laughed & brushed you off. I would not have shown what was behind that smile anymore than I would my naked body in front of the mirror that day. But my therapist's gentle words spoken wisely during a previous session, reminded me that misogyny was not just about men hating women, we women were pretty good at hating ourselves too.

In that slow boiling stew of toxic masculinity, authoritarian belief systems, patriarchal under-structures, and blatant objectifying of our parts, as if detachable pieces of a macabre Mrs. Potato Head doll, we had at some point, become too defeated to stand in solidarity against it and decided the best thing to do was simply to agree. The lucky ones were thin enough, blonde enough, fair-skinned enough, and had just enough money for liposuction and a boob job. The rest were left to fend for themselves, to continue to be knocked back into the depths of that stew, by  some red-heeled stiletto fighting to maintain her own status, while secretly knowing her physically desirable days were numbered.

I returned to the mirror each day after that and looked myself directly in the eye, repeating out loud "I love you. I love this body. This body has carried me. This body has birthed my babies. This body has held my grandchildren. This body has carried me through everything I've ever been through. You are beautiful. I'm sorry I didn't respect you. You deserve so much more. You deserve to be loved. You deserve MY love. I will never desert you again."

Almost a year after the date of that diagnosis, and twenty pounds heavier, that morning routine has given way to the busyness of my new life. The prognosis has been upgraded from Aggressive to Systemic, with a normal life expectancy, albeit, not a normal degree of life activities, and by no means symptom free.

For the most part, people do not notice the tell-tale visible symptoms spread across my cheeks or down my arms, that reveal the ongoing invisible activity of the disease, the still unmanageable without medication reaction to food and environment, the heart issues, organ issues, central nervous system damage, and misfiring information pathways between my brain and the rest of my body.

What they do see is a woman who now has a more appropriate level of muscle mass, and fat already settling back into all the perceived wrong places. They think the physical appearance is evidence I've conquered this thing and cheer me on with socially acceptable words like "You look great! I'm so glad you are well!" As if health can only be measured by a narrow range of outward features & falls somewhere between emaciated and slightly underweight on the bathroom scale.

It doesn't matter if I try to explain that in spite of all the good progress, my new normal comes with daily symptoms that leave me slightly wrecked on a good day, to completely debilitated on a bad one. The message continues to be that the thing that matters most is what a woman looks like on the outside, how she makes others feel if she doesn't smile, and how much better it is for everyone else if she can just put on a happy face. And her big girl panties.

I'm still swimming in all of that with the rest of you. Still daily measuring my worth broken down & added up by my parts. I look down at my hands each morning and notice the new lines permanently etched by the struggle of nearly dying and coming back to life, and have to force myself to shift from hating them, to loving them. I still step on the bathroom scale with concern of letting myself go too far. And today in writing of these words, I am seeing how much I need to return to that practice, of standing fully exposed to my own eyes in front of a mirror, while I remind myself that only when I remain in a place of full honesty, vulnerability, and authenticity will I thrive.

It is in that place where I am able to stare at my own reflection, look myself in the eye, and repeat the loving mantra that my worth has nothing to do with my body, that I know I have become fully alive.