I’m an illness orphan: mysterious health issues, revealed. Part one.

As I first step into the fan of warm water raining from my pretentious filtered shower head, I shriek silently, and quick gasps and quiet screams curl from my lips, as I crumple while the multitude of molecules made of one oxygen atom and two hydrogen atoms sting like thousands of fire ants infiltrating my body’s wall.  The warm, just warm, not hot, water sizzles my raw, slit, scraped skin, and I tense my whole body, straining, contorting, folding in on myself as if this will make the unrelenting scathing end. (Am I being dramatic enough yet?) Then a blood vessel pops. I didn’t even know such a thing could happen in this scenario. It appears my eye has been smeared with red paint.

You know in The Lord of the Rings, the flaming Eye of Sauron or the Eye of Mordor, well that’s kind of what my eye looks like here. And I thought, Geeez, popping blood vessels in my eyeballs is not what I needed to add to my beauty routine. Along with swollen, wrinkled eyes, a raccoon-face, red donut surrounding my eye, frighteningly red and inflamed skin all over my body, a wrinkled, bleeding, weeping neck, well, this just seemed a bit much. It’s kind of like wearing enormous earrings when you already have on seven necklaces, four bracelets and a purple and orange floral dress. It’s just too much. An unnecessary accessory. My flaming eye ball of Mordor was a fashion faux pas. The blood vessel burst because I was in a special type of pain and discomfort.

Actual photo of my eyeball. (but not really)

My body has become allergic to everything seemingly. And a myriad of other things are happening. More on that later. Showering right now kind of feels like someone taking a cheese grater to my skin whilst graciously pouring salt all over the tiny open woulds blanketing my body. (I don’t recommend trying this.)

I realize this type of pain is nothing compared to what a multitude of people endure on a daily basis. You know who you are.

But my body is deeply confused about what’s what and what to do about it.

I often feel like all that is happening shouldn’t be affecting my life this much. Am I imagining it?  Am I exaggerating it?  But I have to plan everything around what is happening to my body.  What clothes can I wear that won’t be painful?  What fabric won’t I be allergic to?  My skin feels like it’s been burned. I don’t want to move my arms or legs or turn my head and strain the skin on my neck.   I haven’t been able to fall asleep until 6 a.m. and sometimes 7 a.m. lately, which is later than I used to wake up every morning.  I’m uncomfortable all through the night because I don’t want anything to touch me, and I’m ABSURDLY itchy. (Maybe that sounds benign, but imagine ants crawling all over your body all night, biting you while being burned with a hot skillet as your entire body is emits heat like a radiator but you’re simultaneously shivering and shaking uncontrollably.

I promise I won’t be complaining and throwing a pity party through this whole smattering of words. I mean, maybe. You’ll see (Mwhahahahaha!). Originally, I meant for this all to be a comedic take on everything that’s going on. I mean, I now wear a hazmat suit to clean my apartment so I won’t have some enormous allergic reaction and have to go to the hospital. I look (and feel) like an astronaut while dusting and sweeping. I’ve confused a few neighbors when I step onto my balcony and disrobe from my hazmat suit. (Don’t worry, I have clothes on underneath.) If that’s not humorous, what is?

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Why has there been such a dramatic increase in allergies, autoimmunity, certain cancers and other diseases over the last few decades? I’m exploring that these days, but that’s not really what this slab of words is about. Perhaps I’ll write about such things later. I just want to throw this in here to confuse everyone.

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I’m not exactly writing this to share my story or improve anyone’s life. Not really, anyway. Maybe a little. Mainly, I’m writing this to improve my own life. I know, I know, selfish. Because it helps me process and let go of emotions and memories. And maybe by some magical magic’yness, if I get all of this down in the written word, then it will leave my body and only remain existing here on the page. This writing also provides a distraction from all that is unfolding in regards to my health. AKA I want to rip the skin off my body. Everything hurts. I don’t want to move my body. It hursts to wear clothes. I can’t leave the house. If I leave my home, I will surely terrify old ladies and small children because of how I look. I don’t know what to eat. I’m allergic to everything I encounter. I can’t sleep at night. All night. Literally. No, actually literally. Not like when someone says “I literally died.”

I guess I’m also writing this because there are so many difficult-to-diagnose diseases and health issues out there that people are struggling with every day. I feel like doctors, family members and friends often don’t take them seriously because they don’t understand them. And many of these ailments are rather new in the realm of scientific study, as there are new diseases and health issues popping up because of the changes society and industries have undergone over the years. I often have not taken people seriously, as I’ve had the mentality to just “buck up” and push through the pain. Don’t be a pansy. Don’t be weak. People shouldn’t see that I’m vulnerable, so I will push that mentality onto others too.

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I’ve been grappling with these health issues for about four years, but the last 11 months have been the most brutal and unending. It’s the kind of thing you don’t know when it will end or how much worse it will become. Some days are better than others and you think you’re taking a turn for the better for ever. And then you fall back down into the all-encompassing, can’t-focus-on-anything-else, please-let-me-out-of-my-body phase.

I realize what I have going on isn’t the worse thing ever in the world. But it does occupy my mind (and body) on a moment to moment basis. I have to be conscious of almost everything I choose to do, in regards to what I eat, drink, what touches my body, what clothes I put on, how I move my body, where I go, what I’ll be exposed to when I go, what new things is my body allergic to, what do the people around me have on their body—perfumes, animal dander, cleaning products, chemicals? Will I be able to open my eyes in the morning? Will I sleep more than one hour tonight? Will I sleep at all?

My body is seemingly attacking anything it comes into contact with; that is, water, clothes, hot and cold temperatures, food, drinks, when something barely touches my skin, any cleaning product or chemical, a feather, animals, plants, squashes (for real) and so much more.

In some ways, it sort of feels like I’m slowly becoming the Bubble Boy from that episode of Seinfeld. It feels like one day some day soon I may have to live in a bubble because my body can’t seem to handle anything it encounters. Yes, let’s just laugh about it for now. Mary-Margaret the Bubble Girl. Hahaha*. [Secretly crying my eyes out*].

My health issues are multi-faceted and complex. This isn’t just skin deep, something is malfunctioning within my body, of course. And there is pain and mayhem within my bod, but it’s difficult to discuss and nobody seems to know what’s going or how to fix it. I've been tossed from doctor to doctor, as I’ve heard many people have been with such ambiguous issues. We’re like illness orphans. Nobody wants to claim us or knows what to do with us, so we’re just wandering the streets opening random doors hoping it’s our home and that someone can help us.

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[Some of the following writing was written at various times, random bits from recent months. I might date certain things, some I might not.]

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Journal entry, Mid-December, 2020:

“I’m sitting here on my bathroom floor, in front of the sink, listening to sad music by John Moreland finishing up a dramatic cry after realizing just how much all of my dadgum medical bills have added up to over the past year. It’s a hefty heifer much.

But life is sad and life is funny and things are weird and difficult and confusing and sometimes we just have to laugh at it all.”

So let’s have a laugh at some of the things that have occurred throughout my “health journey.” That itself is an annoying phrase. I picture myself in a teeny tiny submarine floating through my bloodstream on a quest to crack the code of my perplexing body. Captain Mary-Margaret on her maiden voyage. Kind of like in the Magic School Bus. Did you ever see that show? They took a bus into someone’s body once.

Previously, I said this has been going on for about four years, but I feel like it’s been building for many more years. I first actually noticed abnormal health things in 2015 after I said no to my first marriage proposal, quit my job and spent some time living in a tent on a farm getting certified in Permaculture Design. As people do.

Maybe that situation ignited the fiery anger in my bod.

(Sorry in advance for anything that sounds gross or unpleasant. But life is unpleasant. So here we are. Also, not all the soon-to-be discussed health predicaments are necessarily related… but they’ve just happened, so I’m plopping them down here. And I will also not discuss all my heath issues. Like my hip injury that will require me to have a hip replacement eventually, and now I’m not supposed to run.)

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Let’s just pop into the view of the fly on the wall at some of my doctors appointments.

We’ll flip the channel to my appointment where we try to determine if the two-centimeter mass in my right breast is cancerous. (Yes, I realize this seems like a large leap from skin issues to possible breast cancer.)

After changing into a stiff, papery blue gown and sitting in a small “room” that was really just a cubby pardoned off by a shower-curtain, I sat there staring at the curtain dance in the wind as people swished by, and my scantily clad body shivered in the subarctic temperature of the office.

They finally called my name, well part of my name, just: Mary. In all my paperwork, I always hyphenate my name Mary-Margaret, so people will hopefully get the point that I am from the South, and I do indeed have a two first names. Yes, it may be unnecessary to have them both, but it’s my name, dadnabbit. If your name was Pam, would you be okay with me shortening it to Pa?

Anywho. So it’s time for my mammogram, and I’m in the dimly lit room with this ginormous contraption that looks like it’s either meant to smush my whole body or pull my limbs apart. Mostly it’s for the first…well, to smush part of you, the mammary part. Mammary… funny word. Heehee. If you’ve had this done, you know that it can be a wee bit uncomfortable to have your gals smushed in between two cold plasticy (or maybe metal?) plates. (I blocked it from my mind.)

Hi, I’m about to provide too much information about my body.

So, I’m not super, um, well-endowed in that particular area of my bod. It is what it is. Sigh. Basically, when you don’t have too much to work with, (i.e. much to smush in this contraption so they can scan it for bad things) then by golly gosh, it’s a might uncomfortable. I had to move my body so incredibly close to the contraption, my face was smooshed against some other plastic protruding pieces. Also, they make you hold your breath while each actual scan is being done.

After some smooshing of muh’ chest under this thing a few times, some beep-boops happening while scans took place and holding my breath, I suddenly began to feel a bit tingly, and things became bright and sparkly starry. I thought, that’s kinda cool, but… it’s probably not supposed to be happening. And then I declared “I think I’m about to pass out,” as I began to slide to the ground, mammaries still locked down.

But the nurse swooped in, placing her experienced arms underneath my underarms, dragging me to a chair. It wasn’t pain that got me, but it just felt so odd having this done.

So that was embarrassing. Kind of like the time I passed out when I was getting a teeny tiny daisy tattooed on my forearm by a hefty dude covered in tats.

The nurse assured me that was something that happened often, though I’m not sure if I believe her. She also told me my size was ‘fiiiiiiiiiine’ for the smooshing, and that the ultra big’uns and the flat-as-a-board ones (her words) are far, far worse. That also might be a lie. But thanks, Nurse.

After the mammogram, I moved into a room for an ultrasound of the breast. I lay there in another frigid room with my shirt off as they smeared cold oily wet stuff on my chest. What is that stuff?

She started moving the ultrasound thingy-poo on my breast (I hate the word breast. But I hate the word boob more.) Anyway, it’s cold and she’s really pushing down on it in order to reeeeeally get a good look at that mass up in there.

I learn that I apparently have ‘extremely extremely dense breast tissue,’ making it wildly difficult to see if there’s any cancer hanging out in there. So this nurse brings in the head-hancho doctor to take a look. Before she arrived, the nurse warned me, “she pushes a lot harder than me, so be ready.” The doc was a slight woman with fierce angular features. The nurse and head-hancho were talking quietly to themselves while looking at the screen. That’s never comforting. Come on, tell me what you’re saying and seeing! I’m right herrrrre.

Then the doc starts pushing the contraption all around. It hurts to have the mass pressed on (which I think is supposed to be a sign that it’s not cancerous actually… I heard?). She speaks in some Russian-like accent as she aggressively interacts with my breast. Sheesh, we just met, doc.

Long story short, or maybe not so short, she couldn’t ever get a view of cancer. I learned that if I wanted to really find out if I had cancer, I’d have to get a biopsy and all that jazz. I also learned that mammograms and ultrasounds are really expensive even with insurance. Which made me decide to not proceed with more tests because frankly I don’t want to pay for them nor do I really have the means to do so.

I also learned that when you have really dense breast tissue, and the head-hancho doctor can’t see cancer but they don’t exactly know for sure, for sure, they will send you a letter in the mail that explains: ‘We couldn’t find cancer, but you still might have cancer, so don’t sue us if you end up having cancer. And consult with your doctor. But just don’t sue us. See, here, now you can’t because we sent you this here letter warning you that you might have cancer, we just couldn’t see it because of your abnormally dense breasts.’

Some of you may be thinking, ‘That’s rather irresponsible or stupid or ridiculous. Don’t be such a boob, Mary-Margaret, just go ahead and really figure out if you have cancer.’ But.. I’m pretty sure I don’t. And no one is making me go get a biopsy, as in doctors aren’t forcing me to. And lots of people have masses in their breasts that mean no harm. And I think I would be losing weight if I had cancer, but I think I’m gaining weight. Also, again, everything is expensive. And our healthcare system is a a bit of a mess.

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Back to regular programming of the show: i.e. discussing the stuff that’s really driving me bananas.

Whatever I’m suffering from, no regular family doctor, naturopath or allergist has been able to figure out. I’ve realized that if you can’t put a name to something, people generally don’t care too much. If you have an official name for it, a person can put it in a box and think of it a certain way. We like to know what things are and be able to identify what they mean and how they fit into our world. Hence why I am a street-wandering orphan in the healthcare system.

My stuff doesn’t really have a name. It’s a combination of all kinds of poorly-functioning body systems. Or maybe I should say my body is just confused. Or it’s trying to tell me something. Yes, she’s just confused so she’s attacking herself. Kind of like a scared, deranged animal in a cage, that slams its body against the walls, trying to run out of the cage only to once again crash and crack its face into metal bars, ripping fur off its body, scratching, tearing at its own skin. That’s me.

Me.

One of the aspects of my issues that drives me absolutely [I want to cuss right here] insane, are my skin issues. Some would say its severe eczema. ‘Oh, eczema, that’s just a little dry skin or rash,’ you say. ‘That’s what babies have sometimes,’ ‘Just moisturize more.’ ‘Have you used coconut oil, Mary-Margaret?’

This makes me want to slam through a wall like the Kool-aid man.

IT’S NOT JUST DRY SKIN. And this is not eczema. It is and it isn’t. It’s an allergic reaction to foods I eat, to anything I drink. When a hair from my head touches me, I get itchy and sometimes break out in hives. Water can make me break out in hives. Sweating makes me want to tear and rip my skin entirely off my body and never put it back on. I can’t work out anymore. I can’t take showers without wanting to scream and perhaps without busting a blood vessel, as we’ve learned.

As I’ve said, it keeps me up all night. I never sleep more than an hour in a row, and often I don’t sleep more than 30 minutes at a time. Every blanket is uncomfortable. My temperature regulation is all kinds of off. I don’t want anything to touch me. It hurts for anything to touch my skin. It hurts to turn my neck or to have my legs and arms bent a certain way.

I generally sleep for about one to five hours per night. For nearly 11 months now, it’s been this way. No, really, that’s all. Usually around three hours. Lately about two hours. That one to five hours of sleep is gathered over a long period of time of me tossing, turning, ripping blankets off of me, holding ice packs against my skin, laying wet towels on me, slathering all kinds of skin remedies all over my body, crying, scratching, bleeding.

And let me tell you, things get pretty darn interesting when you’re sleep-deprived every single day of your existence and you go to work and interact with the public. (*Since first writing this, I had to quit my in-person job because everything with my health has gotten too out of hand and unpredictable. Yes, really. Sigh.). When you haven’t slept, things can be extraordinarily funny that aren’t actually funny at all. It’s great! Things can be unbelievably sentimental and inspiring. Awwwwww. I looked up in the sky a few days ago and saw a hawk or some such bird flying, and I just immediately started crying (whilst walking down a busy street) because I thought: ‘Wow, he’s so majestic. And life is beautiful.’

But it’s not all fun and games, folks. My brain also has way less patience. Sure, I can somehow manage to fake it at work. But I usually feel like flipping over tables and/or just running out the door because sometimes nothing seems to matter when you haven’t slept and are probably borderline secretly psychotic. (I say this in a sort of joking way, as I’m sure I’m fine, and I’m not trying to downplay those who are indeed psychotic. I only bring it up because there are studies that show major sleep deprivation lends itself to psychosis.) I’m fine. How are you?

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I can’t be within a ten foot radius of a dog, cat, horse or hamster without having an allergic reaction. I can’t let water touch me unless I intensely moisturize right after (hand washing has destroyed me during this pandemic, let me tell ya).

I’m also seemingly allergic to smells, fragrances… like just in the air. I smell a strong perfume or cologne and my body suddenly says, “Now time bring out hives. Mister Hives want say hello to Miss Fragrance.’

I’m not sure why my body talks like a cave man, but she does. Clearly, she has a lot to learn.

Clothes make me itchy and rub my skin raw. I have to choose each item of clothing specifically if I want to actually remain in a semi-bearable state. Which means I have to wear loose clothing. which also means, I have to choose each day: Do I want to look cute today? or do I want to look like I’m wearing a sheet for a shirt and trash bags as pants?’

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My suffering usually goes unseen by most individuals. Sometimes I’ll look like I’m strung out on some kind of drugs just haphazardly scratching my skin. ‘Hello, I’m Mary-Margaret and I’m on crack. But not really, a leaf just touched my skin, so now I have a monstrous weeping rash all over my body.’

Apparently my cortisol levels or regulation of cortisol is out of whack, which connects to my temperature regulation, sleep/wake cycle, stress levels, blood pressure, weight gain/loss (I’m on the gaining side, I’d say). According to good ol’ WebMd, “Think of cortisol as nature’s built-in alarm system. It’s your body’s main stress hormone. It works with certain parts of your brain to control your mood, motivation, and fear. Your adrenal glands -- triangle-shaped organs at the top of your kidneys -- make cortisol.”

At night, my body tends to be in fight or flight mode, when I shouldn’t be flying, I should be lying. I tend to shake uncontrollably whilst simultaneously being unbearably itchy. My hands become entities of their own and scratch with no abandon, as if there are no consequences, as if they don’t have to go to work the next day and show everyone the pretty red, bloodied marks they’ve made all over my body that also has to go to work.

My inflamed eye area has aged me to that of a 72-year-old woman who’s smoked all her life and thinks French Fries are a vegetable.

Speaking of vegetables. Some people think part of what is wrong with me is that I’ve been poisoned by all the chemicals that now reside in our food. Pesticides, glyphosate and all such things.

I definitely think this could be a contributing factor.

Some people think it’s because I’ve been vegan for seven years. Or “plant-based” as I like to say, which sounds even more pretentious than ‘vegan.’ Maybe that has contributed, maybe, BUT my husband has been vegan longer than I, and he’s just flipping fine. And so are a millions of other vegan people (Yes, vegans are people too, I think?). But also (drum roll, please)…….. I’ve tried eating meat again lately. There I said it. Pretentious organic grass-fed beef, to be exact, prescribed by my Alternative Medicine doctor. And some local, organic eggs. [Don’t worry people, I saw regular doctors too.]

***BREAKING NEWS : This just in! Mary-Margaret may have a nickel allergy! which means her plant-based diet high in whole grains, beans and nuts MAY INDEED be contributing to her ailments.*** [We made this potential discovery after I’d already written this piece.]

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Let’s now flip the channel to one of the times I had acupuncture done.

(I’m actually still going to acupuncture some. I’m not sure if it helps at all. But I’m going. #desperate)

I go to a place in East Nashville that is certainly not the fanciest (but everyone is kind and helpful). There’s a whole bunch of humans lying in recliners, often asleep whilst needles protrude from various areas and extremities—all in the same room. It’s pretty odd-looking, really. There’s soft meditation music playing and dimly lit lights that look sort of like ginormous snowman lanterns sitting on the floor staring at you while you lay there like a slug.

During one of my first few sessions of acupuncture, I found myself getting extraordinarily uncomfortable after some long-feeling amount of time. I had to pee like a pregnant lady needs to pee, as in RIGHT NOW. This went on for some time. I shifted around, tried to not pee in this lazy-boy-like chair. I tried to meditate, chastising myself for not being able to reach inner peace, tranquility and self-actualization in what shouldn’t be more than 45 minutes to an hour. (They come get you after that allotted time. Supposedly.)

I had reached my bladders bursting point, and the rest of my body wanted to explode out of this stagnant position. So I finally sat up and someone came to pull the needles out of my bod. They didn’t act like anything was off, and I just walked out in search of a bathroom. Whilst I sat in the stall releasing all the urine one could possibly hold (don’t you hate the word ‘urine’? Ew.), I glanced at my phone to see missed calls and a text from my husband asking if I was okay, worried. And yes, I held my phone while in a stall of a public restroom. Don’t even play, you do it too.

Upon looking at the time, I discovered I was left lying in the chair with needles sticking out of my body for over two hours and fifteen minutes.

I thought this was going to be a much more exciting story, but it wasn’t. But that’s a really stinking long time to have to lie still while needles stick in you, that’s all.

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And now we’re zipping over to some Alternative Medicine stuff.

Have any of you ever heard of muscle testing or had it performed on you? It’s difficult to explain but it’s this way of determining weaknesses in the body, sensitivities and allergies to food, supplements, etc. I’m sure there’s validity to it, there is, but.. it just feels hokey. (But again! There’s legitimacy to it. It’s applied kinesiology. I’m not meaning to demean the method.)

For my muscle testing… I hold out my arm as the doc presses down on my arm at various times while she simultaneously presses certain areas of my body or holds a food or pill or supplement against my body to see if my arm drops down more while she’s pushing down.  If my arm drops down, as in it gets weaker when she pushes, then that means I have a weakness in what ever organ, body part she was also pressing on, or have an allergy, sensitivity, aversion to whatever food, herb, supplement she was testing.  Hmmmm, I explained that horribly.  Basically what I wanted to say was that often times, it felt like she was pushing my arm down more at certain times and I wasn’t actually the one reacting to certain things.  I’m sure that’s not true… it just felt rather not foolproof.

Basically, she determined I have all these toxins in my body, heavy metals, bad things, accumulated over the years, from walking on ground laden with pesticides, chemicals, insecticides (likely on our family farm I grew up beeboppin’ around barefoot on, and also from eating mounds of vegetables and fruit doused in crap, and from absorbing all the synthetic, man-made unnatural, chemical’y things from cosmetics, lotions, soaps, shampoos, plastics and all the like).  And from when I took tetracycline in high school for my skin. And when I’ve used oral steroids (not the weight-lifting kind), received steroid shots, used steroid creams (though I kept these to a minimum since I heard they were detrimental to your skin) and all kinds of fun things. This may sound like conspiracy, but THIS I actually believe to be true. I think most of us have been contaminated, we just all react differently and in different ways.

The alternative medicine doc recommended I take a bucketload of supplements that all happen to be sold in the office of this particular practice. (I’m sure they’re legit, it just didn’t sit right with me). But almost literally a bucketload, folks. I did it for a bit, but once my body had fully FULLY turned red from the “detox” and the supplement load jumped to 50 pills a day (consisting of about 16 different supplements), I had to pass. I canceled all future appointments. But before that, in the moment, I purchased all the stinking pills out of desperation, and now they’re sitting in a brown paper bag under my bathroom sink laughing at me. Everyday.

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Allergy Shots

Many people and doctors (not that doctors aren’t people) were certain that allergy shots would majorly help with all my allergic reactions. So I had some allergy patch testing done on my back, and my skin lit up like a Christmas tree strung with only red pulsing bulbs. Beautiful.

So boom. Allergy shots commence once per week. Long story short, I went for many months and my skin and allergies progressively got worse. I kept thinking, ‘This is supposed to happen. My body is acclimating. This is fine. This is fine. I want to burn my skin off, but this is fine.’

The nurse administering the shots started questioning how I was doing since I looked like I had been stung by bees all over my body. I came in one day, they looked at my skin and refused to give me the shot and scheduled me an impromptu appointment with the main doctor right there on the spot.

Multiple staff members looked at my skin and asked me questions, ‘what laundry detergent do you use?’ ‘Have you considered natural alternatives for skin care products?’ (OH MY GOODNESS. Yes I f***ing have.) ‘Are you moisturizing'?’ (Inner screaming and punching. I know they’re just trying to help though). ‘Have you thought about cutting out dairy and gluten?’ (Both of which I do not consume. And my whole life revolves around what I can and can’t eat) ‘Are you sure you haven’t been rubbing poison ivy on your body?’ ‘Have you considered living in a bubble?’

Ok, they didn’t ask the last two questions. But at the end of the appointment, they refused to treat me any further with allergy shots.

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Random things…

I’ve done oatmeal baths, baking soda baths, bleach baths (yes, it’s a thing), epsom salt baths and bentonite clay baths. I’ve tried an infrared sauna (holy cannoli, the sweating made me unbearably itchy itcherooskis). I have HEPA filters in my home, all natural cleaning products, all natural hair and skin products. Like really natural.

I’m removing non-stick pans because I heard chemicals can leech out of them into your food (Go watch the movie Dark Waters, a true story about a lawsuit concerning Teflon/Dupont. The chemical discussed has since been removed as of 2013, but there are other concerning chemicals within. These are things our grandparents didn’t have to deal with.)

I’m eating all organic, I’ve taken out most grains, obviously I’m gluten-free and dairy-free, I completely took fruit out for a while and now have it minimally (because I read that any type of sugar can cause little bits of inflammation). I don’t consume soy, corn, gluten or peanuts. I have a filtered shower head….

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I recently went to another doctor to have a smattering of bloodwork done. At the end of my visit with this doc, I asked, “Do you think any of this could be happening because of environmental reasons, because of what we’re spraying on our crops, absorbing weird chemicals and such?”
Immediately she said, “Yes, definitely, I think you’re at the forefront of what’s going to happen to a lot of people,” that is, diseases caused or exacerbated by our environment, from what we’re putting in the soil, on the crops, and because chemicals and other toxic substances we’re putting into products, because of what we’ve leeched from the soil and because of what we’re adding to products, etc.

“I’m only saying this because you asked,” she laughed after explaining what we do in the healthcare, agriculture, food and pharmaceutical industries is sometimes nonsensical.

Last night, I ate blueberries and oats, and all through the night I was itching and scratching like a mad woman, and after a fitful two hours of sleep gathered over a ten hour period, I awoke with my eyes nearly swollen shut and expansive purply red circles hugging my eyes. Something is wrong with my body, and maybe something is also very wrong with the blueberries and oats. Or the soil they’re grown in, perhaps.

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I meant to write about how this whole experience has changed my life, and how I view everything so differently now.

And I do. It has changed me, and I hope that even if I eventually heal from this, I’ll maintain the new perspective, that I will still be unbelievably grateful for the day I can have a cup of coffee without worry of my body’s reaction, that I will still appreciate my legs and how they carry me through life even if it sometimes hurts to move them, that I’ll understand and fully realize that how we look and what we can do with our body DOES NOT DEFINE US. I still have to tell myself this over and over again, after being someone who ran, biked and hiked all the time. Someone who used to jump off bridges, rock quarries and waterfalls into a wrap-around blankets of water. Someone who ran up and down steep underpasses just for the fun of it. Someone who solo-camped all over the states in the middle of deserts and atop mountains.

I don’t want to feel sorry for myself or seek a pity party. Which some of this may seem as such. But I still feel these things, whether I should feel them or not.

This phase of my life has been the most difficult period in my thirty years on earth. But, I feel like it’s been the most revealing period of my tenure. I’m learning a grand amount about myself, about what matters, what I can endure. I’ve experienced extraordinary kindnesses from friends, family, coworkers and sometimes strangers. I am more grateful for the moments and hours that I feel good in my body. I’m thankful for all that my body can still do.

Sometimes I wonder if there’s some piece of me that is perpetuating this suffering… because as horrible as it is, in some ways it makes me feel more alive than ever, more connected to my body and the rest of the world. It forces me to understand and acknowledge what is truly important. But I also feel like it has stripped the life from me. I feel like a large piece of me has been locked away in some underground dungeon, and I can’t see my way out. I feel like a failure. I feel like I’m failing the people who are closest to me. I feel guilty being the sick wife who can’t do much of anything right now. Feelings, feelings, feelings. Bleh.

But I was told not to think or say such things—by a couple of people, by one of the persons I most feel guilty toward (If it’s even possible to feel guilty ‘toward’ someone). In the past, whenever grappling with something difficult, I’ve always just run away from others.

Like a sick dog who runs away, hides under a house, to die. Not to be dramatic or anything. But I’m not really in a phase of life where it’s acceptable to just run away from everyone. (Not that it’s ever exactly acceptable or recommended.)

From my journal: January 26th, 2021, being dramatic and stuff:

“I feel soft today. Softened. I’m moving softly and feeling things softly.  Whenever I am in great pain, I must move through the world this way.  But it’s not all terrible, I tell you, it’s not.  It slows me down, helps me to notice things, to appreciate, to care only about what one should care about.”

_________________

As I said, sometimes I relish being in this state. It’s like being in a state of hypersensitivity every minute, every second, everyday. I’m on. I’m alert. It hurts. But it makes everything magnificent that before was just mundane.

Pain has a way of doing that to us—making us feel more alive, like we’re really in this, everything is more acute, every detail and delicate piece is laced and etched into our being. Without the pain and heartache, chaos, brokenness, what would life really be? This is the stuff of life.

Humans were built for this. We have endured unimaginable pains and grief and wars. I don’t think we learn too much when things are going all happy, go-lucky all the time. Yes, we sure need those bright yellowy phases, but the shadowed, excruciating parts carve a way to unimaginable joy and awe. We just have to go looking for that grandeur sometimes.

(Man, I sure am sounding a touch dramatic.)

I’m not saying it doesn’t totally stink in the moments and years of tribulation. Because it does. And it doesn’t feel all poetic and lovely when you’re awake, alone, in pain, in the middle of the quiet night, the whole night, for the 246th night in a row.

___________________ 

This past year, we have been stretched beyond our capabilities, beyond our breaking point, or rather, the breaking point we thought we had.  But we’re still going.  We’re still showing up.  Maybe it’s not the prettiest, maybe it’s chaotic and messy and terrible and uncomfortable and we just want it to end. But we’re still here. Maybe we’ve lost some loved ones, lost pieces of our lives and replaced those pieces with another one. But if you’re reading this, you’re still here.

Tony Robbins (ol’ T-Rob) once asked Nelson Mandela, who had been unjustly imprisoned for 27 years, how he survived during all of that time. Mandela said, “I didn’t survive. I was preparing.” I’m certainly not comparing my situation or yours to the apartheid revolutionary, philanthropist, political leader Nelson Mandela’s. But I think that’s what suffering is for all of us. It’s building armor—the good kind, it’s preparing us for whatever we are to encounter and grapple with next, it’s strengthening us. We sure as heck have been preparing this past year—all of us collectively, around the world. And you’ve probably been on your own specific arduous expedition. We aren’t just surviving though. We are learning and growing and discovering and realizing we have more to give and more to do and be. We can push more, even if it hurts like hell.

So I’m here to keep on pushing and to keep on showing up. Are you?

______________________

Whoops that went on a tangent. If you’ve made it this far in my writing, you deserve a medal for this arduous reading expedition.

I don’t feel like writing more, so I’m just going to end it …..here.

Cheers, and thank you for showing up.

I secretly recorded a 12-minute conversation with a police officer at work. Here’s what happened.

The conversation I secretly recorded and other events as of late have made me realize how thoroughly we are entirely misunderstanding each other, not truly listening to one another, and maybe frankly we don’t want to understand the other.  Many people are feeling angry, defensive, attacked and victimized.  Some of us are feeling overwhelmed, sad, hopeful, optimistic and frightened. Slap all of that on top of living within the strangling blanket of a confusing pandemic, and that’s a gargantuan slurry of emotions.  Some people are fuming because they’re being told to wear masks, and some of us are infuriated people refuse to wear a mask in a business despite signs requiring a mask to enter.  Sigh.

I think anger and frustration is entirely necessary at times, of course, but we also need to listen to one another and ask questions.

In total, I questioned three officers over a two-day period at my workplace about mask wearing and why they weren’t abiding by our mask-wearing requirement at our business, as it was explicitly posted on the door. I recorded a 12-minute conversation with one officer, where we also discussed protests, George Floyd’s death and how the COVID pandemic is supposedly “bullshit.”

Here’s one of the first quotes from the main officer I spoke with:

“I think [COVID] is all trumped up by the democratic party. They’re trying to get Trump out of office.  It’s all bullshit, it’s all bullshit,” the officer in downtown Nashville explained to me.

And here’s another toward the end after we spoke about protests and such:

“A lot of these younger kids that got participation trophies when they were growing up, and everybody’s equal,” he said in a purposely feminine-sounding voice with intentionally pouted lips, as he clasped his hands together in a proper, prayer handsy kind of way, “They want reparations from us.  Some asshole sitting on the couch all day, watching soaps, eating bonbons, lazy as fuck, won’t get a job.”

See?  Some of you are thinking, “Yea! See! All police officers suck!  They don’t know what they’re talking about and are just angry idiots! This instance proves it!”

And others are thinking: “Gahhh, here we go again.  Some millennial getting angry at the police and republicans and Trump. These young generations act like pansies, thinking they deserve everything without working for it, thinking everyone is against them.  They don’t understand or respect what others have done for them.”

Maybe some of this is true on either side for various people, maybe none of it’s true. I think, in general, it doesn’t do us well as a society--as a community of people--to make grand sweeping judgements about large groups of the population. And no one is immune to doing this.  We’ve all done it.   

(Don’t worry, stay tuned.  I will be quoting more from the officer).

______________________ 

I originally went into journalism in college because I wanted to learn everything. Everything is fascinating.  Everyone is fascinating.  Everyone has a story, and most people’s story will break you. 

But, then I didn’t really pursue it.

After instances of citizens yelling, “You’re what’s wrong with America!” while I interviewed people standing in voting lines, I began to allow myself to be crushed by the anger and dismay people have for our media.  And I get it.  Much or perhaps most of it is biased.

I became disenchanted with all the yelling, fighting, name-calling, blaming, scream-a-thons I would witness on large news sites.

But it isn’t all like that, and I don’t think it has to be. 

I’m not writing this to yell at anyone, though sometimes I want to. Sometimes I want to flip over tables and punch a wall, but I refrain.  I’m writing to help us understand each other, and really, for me to understand more.  Perhaps you’ll gain some understanding also, as you venture on.

_______________________

What’s that you said? Sorry, I couldn’t hear you over my brain coming up with what I want to say.

This following writing isn’t just about racism, Democrats vs. Republicans, police officers or George Floyd.  I’m a white person, so there is absolutely no way I can ever fully understand or know what it’s like to be black or basically anyone that is not deemed white.  Really, this writing, all my writing, is just me working through something—trying to process it all. 

I think, no, I KNOW some of us white people have never taken the time to acknowledge the inherent racism that infiltrates our Nation.

I had the mindset for a while that I wasn’t or shouldn’t be as “involved” in this…because I’m white. So I wasn’t writing or posting about any of it because I didn’t want to get in the way or say the wrong thing.  But I think because I am white, this means I AM heavily involved in all that is unfolding right now and have been in all of America’s history. All white people are. We need to talk about this, we need to ask questions, we need to question ourselves, beliefs and thought patterns. We need to question why we might feel defensive or angry.

If we don’t question what we’ve always thought, I think we’re doing a disservice to ourselves and those around us. Through any writing, interviews or videos I do or questions I pose, I am very likely going to say the wrong thing and stumble through my thoughts, words and thinking.  I’m going to put my foot and probably someone else’s foot in my mouth.  Please feel free to call me out.  Ask me questions.

We need to listen to one another and ask questions with the intention of sincerely hearing what the other person’s answer will be, instead of NOT listening and just preparing what OUR answer or comeback will be while the other person talks.

______________________

Life makes me feel like a melting marshmallow.

As I was writing the following, I happened to speak on the phone with my parents as they were driving away from the funeral of a family-friend, and we discussed two other people we know well who are grappling with extreme health issues that may defeat them (Covid-related, I should note).  This made me feel less fervent about writing this, defeated, weighed down by all the pieces that are life, like nothing matters.  This doesn’t matter, and my words don’t matter. 

Writing words for others to see always makes me feel squeamish and uncomfortable. It makes me feel like I must think I know something more than others or I think I have some wisdom to offer. But really, I just feel lost, discouraged, confused or upset sometimes, and that’s why I write. I write to think, and I write to ask questions of myself and pose questions to others.

I’m trying to remember I am writing about this because each of our lives are valuable and exquisite. These are issues about caring for one another, realizing that you and I are all in this together.  We all want to be loved, to be surrounded by loved ones at the end of life.  We all want to feel like we’ve lived a life of purpose and integrity, like we’ve left our mark and made a difference.

Recently, I asked a coworker if she ever considered writing about some very specific experiences she’s had. Her response was something like, “I don’t think it really matters what I have to say,” and “I don’t think people will care about my story.” 

I think everyone has something to contribute.  Maybe we won’t change the world per se, but even if your contribution—your writing, your art, your words and actions positively affect even one person, well, by golly, you’ve done it. 

I write because I want to show consistencies in human experience, not the inconsistencies.  I want to focus on what can and does unite us as humans. By working toward bringing us together, you and I have to acknowledge all that divides us.

[Future Mary-Margaret here reading this in 2023. I notice I keep writing about everything except what I said I was going to write about (the police officer), and it’s driving me crazy. But I think I was trying to work through all of this at the time, so I’m choosing to leave all of this rambling and thinking in.]

________________

My brother was a police officer. Does this give me any sort of credit? No? Maybe?

For the portion below regarding the police officer, let me preface with: my brother used to be a police officer, I have friends, other family members and acquaintances who are or have been police officers. I have many military men and women in my family, and I am wildly impressed with what they have accomplished and will go on to accomplish. I don’t think we as typical citizens can ever understand what they’ve done for us, what they’ve experienced, how much such experiences can and will change you and how it will make you view the world and everyday mundane worries of ‘civilians’ in a totally different manner.

Some people reading this may be staunchly against all police officers, and others of you may feel police officers don’t in any way deserve the negative picture they are being sketched within.  And then everyone in between.

Regardless of one’s vocation, I loathe when people think they are above certain other people. I detest when people think they are above the law or permitted to act however they want because of who they are, where they came from, how much money they make, what their job is, etc. From a young age, such acts infuriated me.

Here’s an example of little me…

The Nose Punching of ‘95

During my fifth year of life (a time when I sported a snazzy bowl cut *ohh lala* and could often be found in a mangled princess outfit, a pink swimsuit with frills or covered in snake innards from one I dissected on a picnic table), my seven-year-old brother and I spent lots of time with a 10(ish)-year-old neighborhood boy named Eric. One day, Eric pretended we were invisible. At least he pretended my brother was invisible. That’s the part I remember. We were all under the ginormous magnolia tree in my parent’s yard where everything happened (including the encounter with the rabid raccoon), and whenever my brother would say something, Eric would just say, “What was that? Was that the wind?” and look up into the sky, in the air above his head and continue to ignore him. I became quite perturbed with the boy. I saw this as an injustice. Clearly, he thought this was funny and he was cooler than us because he was older and taller and blah blah blah.

This went on for quite some time. And I wasn’t having it.

So. I punched him. In the nose. And it bled. Ten-year-old Eric ran home crying, holding his face, thanks to a bloody nose he received from a five-year-old freckle-faced girl named Mary-Margaret.

(Life update: Eric is a lovely human, who often posts pictures of cats and sometimes spiders on his social media, and at that moment, he was just being a ten-year-old kid.)

I’m not condoning violence or encouraging your children to engage in a fight club, I just cannot tolerate when someone or some entity steps all over someone else. I don’t understand it.  I’m sure (I know) I’m guilty of taking advantage of my authority, age or white privilege over my 30 years of life, and I will probably take advantage of my position again, especially unknowingly.  But I just want to live in a society where we act in accordance with each other in mind. As in: what’s good for me is good for you kind of system and mentality.

________________________

So here we go….

A Curtsey from Police Officer #1 without a mask.

At work, I asked a police officer to put on a mask when he entered into the business wanting to use our bathroom (which is currently for staff only with a sign saying as such, but we permitted him to do so). He looked frustrated, but he walked outside to his car, placed his mask on after walking back in, waved his hand across his face and said ‘here you go,’ and then did a curtsey in front of me. A curtsey. As in ‘happy now, lady?’

After walking out of the bathroom, I yelled from behind the counter that I had a question. I asked about mask-wearing and who enforces it. I asked if we could be fined. He was shaking his head, and said “That’s a mayor thing,” he said as though it was ridiculous, rolling his eyes, “we aren’t enforcing it.”

He said a few other things, but basically communicated wearing masks was a bit absurd and unnecessary. [I wanted to tell him how my mother-in-law had been hospitalized with COVID, and how painfully worried we were during that time. I wanted to tell him about friends who had lost family members, and other acquaintances and strangers I had met who had painful stories based around COVID-19.  I wanted to explain to him that the pain COVID is placing on the world is not merely the number of cases or the mortality rate, rather, a whole host of side effects that ripple into the masses, ravaging people’s health in a myriad of ways, even if they never contracted COVID.

_____________________

“COVID is bullshit.” – Police Officer #2

The next day, I spoke with another police officer who also kept coming into our business without wearing a mask. (There was construction just outside the business, and these officers were directing traffic for a few days, and we had the closest bathroom, I suppose).

Anyway, the officer comes in, and points to the door that leads to our back room that reads “STAFF ONLY,” makes eye contact with me and walks through. While he’s doing whatever he’s doing in our bathroom, I pull out my phone and turn it onto video mode, begin recording and throw it into my back pocket. He walks back out. (Tennessee law states that if one party is aware of the recording, then it’s okay. I’m not saying it’s right. That’s just what it is.)

“Hey, I have a question,” I say in (what I think is) a thoughtful and sincerely curious way.

I asked about mask wearing again, what his stance was, what we should do as a business, etc. I set him up to feel comfortable with me, letting him know my brother was a police officer/in the military, etc.

“I don’t work for metro,” he quickly blurted out without my prompting. “From what I heard, the Nashville mayor is saying or whatever that they’re going to be issuing hundred-dollar citations or whatever.  For me, the constitutionality of that is in question,” he said boldly in his New Jersey-sounding accent.

“What do you mean?”

“Me, I think it’s all trumped up by the democratic party, they’re trying to get Trump out of office.  It’s all bullshit, it’s all bullshit.” (Interesting that he chose the word trumped)

He did say COVID is real in some way. There is a coronavirus out there BUT…..

“They’ve taken the statistics and inflated them.  You get tested for COVID, right, and you come up with a positive.  They test you the same way they do for the flu, the symptoms are the same.  Research is showing that the tests that they’re administering right now cannot DIFFERENTIATE (he said this word loudly) between the flu and COVID.  You get a positive, you may [just] have the flu.”

He had a very quick way of rolling off his words.  They were all very pronounced and almost pelted at you.

“Now granted, if you’re elderly, have a compromised immune system, if you’re a 65-year-old man or woman with COPD, emphysema, and you get COVID and it kills you.. You didn’t die from COVID.  Did COVID exacerbate your death?  Yes, but you were already freakin’ dying from your stage four cancer and shit. And you say it was a COVID death? No. it’s all trumped up.”

I have a lot I want to say, but I try to create some silence, so he’ll keep talking. Luckily, I didn’t need to wait at all, as he was very willing and happy to keep telling me things without my prompting.

“Do people get onto you for not wearing a mask?” I ask.  “If I were to be like ‘hey, you can’t be in here unless you wear a mask, what would happen?’”

He didn’t answer that question and explained, “There can be a medical reason someone cannot wear a mask.”

“Do YOU have a medical reason?”

He seemed to feel a little defensive.

“This is just me.  I’m a Yankee.  I’m military.  I tell you how it is.  If I’m ever stopped, and I’m not in uniform and they ask me why I’m not wearing a mask [his response would be]: medical reason, what’s your medical reason [this hypothetical person asked]: HIPAA,” he exclaimed.

“What?” I ask. (Because I thought he said ‘hippo,’ which at that moment, I considered: ‘I don’t know, maybe this guy is just totally cuckoo for cocoa puffs and just starts randomly saying animal names.’)

“HIPAA,” he retorts.

“Oh yea, HIPAA,” I say as I realize he’s not haphazardly yelling out names of large mammals.

For those of you who don’t know, HIPAA stands for Health Insurance Portability and Accountability Act,” which is basically a privacy rule, meaning you don’t have to disclose medical information (which is indeed important in certain circumstances).

“That mask you’re wearing right now, ain’t doing shit for ya.  They’re not doing anything,” he declares to me, pointing at my face.

***

Even if somehow this is true, and it very well could be, wearing a mask is a sign of respect for your fellow humans.  It’s a sign of solidarity and acknowledgement that we’re all in this together.  Even if it doesn’t entirely work to prevent the spread of virus on its own (as there have been conflicting studies on how well cloth masks work), but just seeing a physical mask on someone’s face is at least a reminder that ‘Oh yea, we’re in a pandemic. I should probably distance myself from others.’

Maybe you personally won’t die or become very ill from COVID, but someone else might.  Even if somehow we as a society have totally overestimated COVID-19, we all (at least most people) have been impacted by this pandemic in some way. Whether it be by losing our job, working less, getting sick, having a family member get sick, losing business, having to shut down our business, etc.

If there’s a chance that we could potentially save someone’s life by wearing a mask or prevent them from having to stay home from work, why wouldn’t we wear one?  I think we also need to remind ourselves that we don’t wear masks to protect ourselves, we wear masks to protect OTHERS.  By wearing a mask, you don’t spew and toss your germie germs onto everyone as easily while you’re talking and breathing.  

Wearing a mask shouldn’t be political. It’s a human thing. It’s a sign of camaraderie. It’s a sign of kindness.

Just as the phrase ‘black lives matter’ shouldn’t be political, masks shouldn’t be political.

If you feel that being told to wear a mask is encroaching on your constitutional right, what about being required to wear clothes to be permitted to go places, or that whole ‘no shoes, no shirt, no service’ thing? This is just a requirement we’re not used to, and people tend to not like change or being told what to do.

***

Back to Officer No-Mask….

“Is there research out about that?” I ask.

“Oh yea, it’s out there. The mainstream media just doesn’t want you to see it.

“They want everything to re-shut down,” he explains, and says something about Trump that I can’t quite understand, but it had to do with the media wanting Trump to fail, he says.

“Where’s the best place to find that information?” I ask, genuinely curious where he gathers his information.

“Where?  It’s tough… to actually get accurate information. Uh, the CDC, they’ll have some information, but again, it’s all democratically driven.  It’s very unfortunate.  Coronavirus and the spread of it is real. My buddy, his wife, his daughter, his son-in-law and father-in-law and brother in law all had it. They’re fine.

“And they’re saying that ‘oh you can be asymptomatic.’ Noooooo,” he responds to himself, his mouth turning into a small tunnel with ooooooh spiraling out of it.  “You’re not asymptomatic.  You either have it or you don’t.  There’s no, ‘well I have it, but I don’t have symptoms, or I have the antibodies.’  It’s all bullshit,” he declares.

I can’t get a word in the conversation.

“Think about it, think about it, the highest spike in cases right now [this transition didn’t totally make sense to me], “and May 25th when the dude died in Minnesota [George Floyd],

“Granted that was wrong by the officer. Again, he didn’t die from what he did, he didn’t die from having a neck on him.  Did it exacerbate his heart attack?  Sure. But if it suffocated him, he would have had petechial hemorrhaging.  It’s a natural body response.”

He went on to say that Floyd was a career criminal and had drugs in his system.

When we start to talk about having drugs in his system and his past, I think we’re kind of entirely missing the point of why the whole nation and much of the world is in an uproar about these unnecessary deaths.

When the police officer held Floyd down with his knee for eight minutes and 46 seconds, he didn’t know he had drugs in his system, and he didn’t know his entire history.  I don’t know his entire history.  I think some people are searching for all the bad in his past, and some people are searching for all the good. 

I understand when a police officer truly fears for his or her life and in self-defense kills someone.  Killing someone is never the preferable answer, but it makes more sense in that scenario.  That’s not what happened in this situation, and there have been a great many situations where unnecessary deaths have occurred.  

The officer started talking about many topics and ideas all at once and it became a little confusing.  Some of the thoughts of his didn’t quite flow together in full, natural sentences.

He explained that ‘they’ purposely planned the protests in Arizona, Texas and Florida because that’s where Trump was supposed to have rallies.  By protesting there, hotspots of COVID cases were created, preventing the rallies from taking place, he said.

“They are taking this and spinning it to meet the democratic agenda. They don’t want Trump in office.

They can’t control him. 

“Now, granted, my only issue [with Trump] is arrogance.  Ain’t nobody perfect.  But he has the courage and ability* that Ronald Reagan had.

 “A lot of these younger kids that got participation trophies when they were growing up, and everybody’s equal… They want reparations from us.” (he just kind of kept talking non-stop).  “Some asshole sitting on the couch all day, watching soaps, eating bonbons, lazy as fuck, won’t get a job.”

He explained to me that, during a protest, once a protest participant steps out onto the street, it is no longer considered a ‘peaceful protest’ because it’s “blocking someone’s freedom of movement” down the roadway.  “BY the constitution, that’s what it says,” he exclaims in a satisfied, I-win-this-conversation kind-of-way.

 “Call me a conspiracy theorist, sweetheart!” he blurted out in his New Jersey’esque accent, hands thrown up in the air to each side. Sigh. Please, don’t call me sweetheart.

 Just to note, as not to leave out information, he said his grandfather always said, “There’s two things that are never present in a fox hole: doubters and color.” (For anyone who doesn’t know, as he thought I didn’t know: a fox hole is where you take cover when in a war, basically.)

I at first thought he meant “colored” people weren’t allowed in a fox hole, but he meant you don’t see color when you’re fighting in a war, especially in a fox hole.  I think he meant this in a nice way and to suggest he was not racist.  However, referencing extreme scenarios as the time to finally not care about someone’s race is perhaps not the most compelling argument for being non-racist.

I think saying you “don’t see color” isn’t helpful, even if people may mean it in a kind way (sometimes it’s defensive).  I think if we choose to not see color at all, we relinquish our ability to understand that others DO have to live life differently than us.  We have to acknowledge our differences in order to understand what others grapple with throughout their life.

We also somehow managed to talk about people with addictions. (I believe this came up because I countered that some people do need financial assistance and other types of support to get through periods in life, certain situations, etc.).  He relented with a conversation on addiction, and it sounded as though he had personal experience with such. 

He talked about his addiction with cigarettes, but it sounded as though he had more experience with addiction, either his own or someone close to him.  He explained that it is a choice to drink or drug, but once it gets ahold of you, it won’t let go, and it’s no longer a choice.  It’s a disease.

This was a subject he felt compassion, understanding and empathy toward.  He understood why people would need an immense amount of support in these circumstances.  I dare say this is because he actually had experience with it.  It seems that much of his thought patterns and beliefs are based on his experience, which is what it is for most of us.  This is why we all need to branch out of our lives, ask questions, listen to others and peer into their experience in order to better understand what it’s like to be someone else.

*I am not totally sure what word he said on the recording. It was something complimentary of both Donald J. Trump and Ronald Regan.

__________________________

“I am the least racist person in the world.” – President Trump

The words of our leaders’ matter.

In an interview, the president of the United States said he is “the least racist person in the world.”  A bold statement, for sure.  It seems that the leader of our country, a wealthy white male, should be able to at least acknowledge that perhaps he may hold some deeply ingrained pieces of accidental racism within himself and within this Nation (or perhaps not accidental). This is NOT just a view I have about our current president, but any white male president of the United States, which is all of them except for Barack Obama.  That’s 44 white male presidents.  If we peer into our history and also take a critical look at ourselves as a nation currently, we can acknowledge that we grew up in this racist society and it is essentially impossible not to have at least some socially-induced racism within our ways of thinking and living.

I recommend reading “The Color of Law” by Richard Rothstein and “White Fragility” by Robin DiAngelo to better understand how racism is built within the pillars of America. There are, of course, many others to read.

I shall not speak much more on President Trump.  You all have your opinions, and at this point, if you have remained the same in your stance, I imagine you shall stay put.  I think the words and actions of our leaders hold grand importance.  Think about the examples of our leaders’ and the examples you want to set for your spouse, friends, children, coworkers, boss and strangers.  How do our various leaders’ actions hold up?  Is this how you would act and want to set such an example? For your children?  Is this how you want the people in your life to act?  I believe our leaders should be held to a high standard, as that’s where they chose to place themselves.

This is a bit of a tangent, but just a note: on Twitter, our president threatened to defund some schools if they chose not to reopen for reasons related to COVID-19.  He threatened schools on Twitter. That sounds like something an angry teenager would do.  A nation should not be led in 280 characters or less. (The length of a tweet, for those who don’t know.)

***

If you’re a white person…

If you’re a white person and you’re suddenly uncomfortable being white and you feel persecuted, singled out and harassed, if you feel like the victim of hate, I’d say that massively pales in comparison to how black people have felt for the entire existence of America.

It’s time we white people felt uncomfortable in our skin, it’s time we looked around and questioned how we think, act and live.

I saw a meme recently with one side of the picture reading: “Racism sucks,” and the other side of the picture said: “Being falsely accused of racism sucks too.” *major face palm moment*  I’m not black, and I certainly don’t claim to know how being black feels, but that does not compare in any way. Suggesting so is entirely disrespectful to black people and an ignorant notion. (Not to blatantly throw out my opinion or anything. *insert sly smile*)

I’ve always prided myself on being an advocate for all people, wanting everyone to be created equally in all facets. I mainly focused on homeless and impoverished people, people who are deemed to be “lower class” or who have a lower-class job or live in a “bad” area of town or who are less formally educated.

However, I honestly did not focus on the major discrepancies between white and black (and other minorities). I saw it, I knew it was there, but I didn’t speak of it specifically and individually. I think I was a little afraid of doing so, for fear of offending or upsetting some people. I aim to push through this fear, in order to help myself and hopefully some other people (white people) understand what has been happening basically the entirety of America’s existence.

I am guilty of not being aware enough and not talking about it. And I’m also guilty of talking about this with my groups of middle class and upper middle-class white friends and family, getting angry about racism and not doing a thing about it.

I’ve heard many people say ‘black people get things white people don’t get,’ like Black history month.

Every month is white history month.

The great Tony Robbins said, “Contrary to popular wisdom, knowledge is not power—it’s potential power.  Knowledge is not mastery.  Execution is mastery.  Execution will trump knowledge every day of the week.”

So if we have knowledge of our racism and others racism, we need to put our knowledge into actionable change.  (I’m still figuring out what this looks like).

I’m not writing this for my black friends. I’m writing this for the white friends, family, acquaintances, strangers so we can think about this together, so we can question our ways of thinking and living, so we can acknowledge and question the racism that is instilled within our society, culture and laws, and in our families and friend groups.

It seems that some of us are acting like this whole racism and discrimination thing is a new resurgence, and all of this madness just popped up again. I’ve heard some black friends say their white friends are reaching out to them NOW to check in and see if they’re okay. And the sentiment I’ve heard they feel is: “um, this has been happening all along, and I’ve been dealing with it my whole life, but thank you for checking in on me now.”  As in, we white people are kind of ignorant. And we are! Racism and discrimination have always been with us.  Since 1492 when ol’ Columbus floated over here and all the European dudes started destroying the native American’s existence, since the official declaration of the original American colonies in 1776, since 1865 when slavery was supposedly abolished, since indigent black child apprentices were “employed” in the late 1800’s and early 1900’s, since Veteran’s Affairs denied black WWII veterans mortgage subsidies and since Trayvon Martin, 17, was killed as he walked through a gated community.

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The Young vs. The Old(er)

I feel like there is a wide divide between the young and the old right now. With the old thinking the young ones are overreacting and the young ones thinking the older ones aren’t understanding and are thereby under-reacting.

I’m not saying everything everyone is doing is right.

But I dare say the generations following the era of slavery thought the generations who lived before them were thinking and believing in an entirely incorrect and absurd way.

Isn’t it possible that younger generations could be right? Just as previous younger generations were right in moving toward a more equitable direction? Could this be happening again?

Did you agree with everything your parents believed in and taught you? Did you believe all the things your grandparents lived and stood for? There are many wonderful aspects of previous generations and commendable ways of living, but that doesn’t mean we should accept all the pieces. There is good and bad in all of us and in all of history. Search for both within yourself and within society at large.

People enjoy proclaiming, ‘I would never have been racist back then! And I never would have owned slaves! I’m not racist at all!’ or ‘I have black friends/black coworkers/[insert word of choice]! See, I’m not racist!’

And indeed, you may not exaaaactly be racist, but we all grew up in an inherently racist culture. It was everywhere in everything from where you live, to the loans you’re able to get from the bank, to the type of food you eat and is marketed to you, the schools you go to, the clothes you wear, the jobs you get and the pay you receive, to how many tickets you receive while driving, how often you’re pulled over, and all of these intertwine and feed off one another.

Being racist doesn’t mean you’re automatically a bad person. It’s not a good person vs. bad person thing. You can be a good person and be racist (which may sound totally odd and you’re like, ‘Mary-Margaret has officially lost her marbles.’) Racism is a you-grew-up-in-America thing, so it snuck it’s way into your life. The part that defines the good person vs. bad person part is, I think, whether you’re willing to acknowledge it and then make a change. I believe it is something we will constantly have to acknowledge, change and evolve, as it has been so deeply driven into the culture in dramatic but also sneaky and pernicious ways.

“[White people] are still trapped in a history which they do not understand; and until they understand it, they cannot be released from it”

— James Baldwin

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Sometimes I have to be in pain to learn.

I have been battling some frustrating and life-altering health things lately, the past few years, but especially the past six months. It’s been difficult to function as a normal human, and do normal people things.  I sleep only a few hours a night, and it makes me feel psychotic and exhausted.

(I have a point in divulging all this, I promise.)

There are far worse things to be dealing with than what I am in the throes of, but it feels as though I have a major barrier or hurdle that not everyone deals with, which prevents me from being on the same level as others. At times, it feels unfair and unequal. (Not that I should feel this way, but I do.)

I’m not in any way suggesting my health issue resembles living a life impacted by racism, but I’ve noticed that my struggle has made me more acutely aware of other’s struggles, in a variety of forms. It’s helping me understand that we cannot always know or comprehend what someone else is enduring. We don’t know what it’s like to be someone else, no matter how smart and “woke” we think we are. There’s always more that can’t be fully seen or understood. But we can ask questions and try to understand.

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Back to the police officer discussion…

I realize the police officer I spoke with is one person and he does not in any way represent the entire police force. He represents himself.

As I alluded to in the opening of this, police officers and military men and women undergo insane mental and physical hardships over their years of service. This will almost inevitably lead to anxiety, depression, PTSD, various addictions and a whole host of psychological issues/diseases. I won’t discuss all of this at the moment, but this leads us to an entire conversation about how we as a country should better provide psychological, mental and emotional support for our military and police force (and for everyone). What many or most military folks have endured is beyond anything we typical civilians could imagine. Their experiences dwarf the daily concerns and sometimes seemingly minute hindrances we encounter each day. In regards to the overall mental health system in America: we are failing. We belittle mental health issues, and we sometimes chastise and isolate those who endure psychological issues.

When I was a server at a restaurant years ago, a female police officer confessed to me that she drinks to numb all the emotions and anxieties resulting from her time as an officer. (For some reason, people tend to just tell me things). At that time, my brother was a police officer, and she told me to warn him what will almost inevitably happen. She said there will be immense amounts of experiences you will want to forget, that you’ll try to suppress and you’ll basically start feeling angry and depressed. Because you see so much of the bad that humans commit, you begin to view everyone and all of your human experiences this way.  She explained it makes you bitter, resentful and it can move you to isolate yourself from experiencing life with others. In part, because you feel like people won’t understand, and you just view humans in a more negative way, she said.

Clearly, we need to find a way to better support our service men and women in a myriad of ways.  We are not setting them up to function well in normal human society. Re-training is necessary, certain restrictions need to be implemented, mental health training and therapy should be readily available, encouraged and should not be branded as something a weak person needs.

Two of the brothers of the police officer I spoke with at my workplace had passed away. His twin brother was killed in Iraq in 2002, and his older brother, a fire fighter and paramedic, died in 2015.   I imagine this, along with all his other experiences in the military and as a police officer, dramatically influence his viewpoints.  That does not fully explain or excuse any potential actions or words of his, but it’s a piece of the puzzle in the unraveling of the story behind why certain people are the way they are.  Which is what I am constantly exploring.

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Just me, myself and I. Pullin’ up my bootstraps!

We in America relish feeling like individuals, like we’re different, that we’re better than others, that we can do more, that we can go it on our own, fly solo, pull ourselves up by our bootstraps and all such other sentiments of the like.

I feel this. I feel it in my bones even if I shouldn’t or don’t want to. It’s why I by-default want to be alone, why I have always gone on long solo trips across the country, why I camp alone, why I never thought I would get married, why I didn’t want to commit to relationships in the past, why I don’t like people to help me in any way shape or form. ‘I will carry this bed up three flights of stairs on my own! No, I don’t need help lifting that. No, I don’t need to talk about it. No, I’m fine. Let me be alone. I can figure it out on my own. I don’t need your help. I don’t need your sympathy, pity or empathy or anyone’s anything.'

I think this is why many white people in America think anyone who isn’t white just needs to just ‘buck up and move on with it already.’ ‘Work harder,’ they say. ‘Don’t be lazy.’ ‘You weren’t personally enslaved, why do you deserve reparations?’ (Black people do not have the same privileges and advantages as we white people do, even if we white people don’t see or understand it.)

(This is a weird transition and an odd way to end this chunk of writing, but just bear with me here.)

Part of the individualism characteristic we praise and strive for in America contributes to our desire for total control--total control over ourselves, our lives, animals, entire countries and groups of people.  We don’t want to be told what to do or to change our ways. We don’t want to be told to wear masks. We don’t want to be controlled, and when this is challenged, we usually end up becoming anxious, angry, feel attacked or victimized, lash out and do or say something completely irrational.

I think the pandemic is making everyone feel out of control, as everything feels unpredictable. We have to move through life differently than we are accustomed to or comfortable with.  We don’t like it, and we want it to end.  NOW. But it isn’t ending, and it makes us feel itchy, scratchy, uncomfortable, anxious, stressed-out and fearful.

All the protests, George Floyd’s murder and general social discontent have put people on edge and ready to strike.  Some of these events have brought about community and camaraderie, though. 

“We’re all a little bit sad all the time. That’s just the deal…”

We are all here, in this moment, sharing this time together.  We’re all in it. And it does kind of suck.  Let’s just admit it.  We don’t have to talk about rainbows and sunshine all the time.  I think we bond over our shared pain and difficulties. We become closer when we are vulnerable with one another.

I tend to have an existential crisis about every 48 hours, give or take. But in my best moments, I seize the struggle that is ‘being human,’ and I relish what it means to be living life, trying to improve myself, working toward a better world along with all the other little broken, tattered and scrappy humans on earth (all of us). I (try to) embrace that there will be moments and large chunks of our lives that are going to be excruciating, but with those times comes so much feeling. It sucks, right? Gah, feeeelings. Bleck.

‘They’ say: you don’t know what you have until it’s gone. And it’s one of those gosh-dangit-annoyingly-true cliche sayings, and whoever this “they” is knows what they’re talking about. Basically, we have to endure some crappy times in order to relish, truly appreciate and love our life. It doesn’t mean you’re going to be happy all the time or that you should be. It just means you’re going to notice the good stuff more, and you’ll notice that things which previously didn’t really have much meaning now have so much more meaning. It’s such an odd thing to be designed this way, right? But maybe it makes all the sense in the world to be designed so. It makes us resilient, it brings us together during the horrendous, terrifying times in our life—when we need human connection the most.

I tend to resist watching many TV shows because I stink at sitting still and want to feel like Im accomplishing things. BUT in the TV show The Good Place that I was convinced to watch (and I’m glad I did so), the main character Eleanor said, “All humans are aware of death. So... we're all a little bit sad… All the time! That's just the deal.” The other character says: “Sounds like a crappy deal.” Eleanor responds:  “Well, yeah, it is, but we don't get offered any other ones. And if you try to ignore your sadness, it just ends up leaking out of you anyway. I've been there - everybody's been there. So don't fight it.”

Maybe it isn’t explicitly death that we’re all aware of or thinking about, but there’s a lot of heavy, upsetting, confusing and stressful stuff constantly being thrown into our faces. Everyday, over and over. And that can make us feel a little crazy and on-edge, eh?

Even though we’ve seen anger, confusion, death and destruction in all that is unfolding in the world, we’ve also seen an absolute outpouring of human compassion, empathy, unity and solidarity. It’s in us. It is. I see it in my coworkers who are always willing to help one another and genuinely care so much for mankind; I see it in my boss who tirelessly cares for our team in grand and minute ways over and over again, quietly and constantly; I see it in my family who always supports me and gives so incredibly much of themselves to everyone; I see it in my friends who put up with me and my eccentricities and in how they contribute to the world and constantly want to grow; I see it in the customer who brings in the man experiencing homelessness to purchase all kinds of wellness products and just talks with him about life; I see it in the police officer talking to the homeless man about sports, just like a couple ol’ friends (I overheard this convo); I see it in all the acts of selflessness and kindness, in the art work and words and actions of so many people around me and far away.

Go ask those difficult questions, and answer the difficult questions for yourself and for others. Go listen to other people. Think about what their experience has been like and will be like. Notice your differences—it’s okay. You and I are different in certain ways, and we can embrace our differences. And I can’t say it enough: You and I and everyone else are just human. We all need to feel that we belong, that we are noticed and that we have purpose here. We all need to feel we are apart of something grander than ourselves. We all need support from others, and we all need to be open to what others have to offer us.