Personal note: This was written back in August, five months after the start of coronavirus lockdown in our area…and three months after George Floyd. Frankly, I’ve been too chicken to publish it. Too scared to have my friends of color read it and let me know I made some kind of glaring, stupid-clueless error. But I haven’t written a word since stalling on this piece, so I know I have to be brave and let this one go…and accept the criticism wherever I get it. Mea maxima culpa.
I freely admit I probably shouldn’t be writing this morning. I’m a little bit emotionally destabilized. I’ve never woken up startled to realize that I could stand and walk.
Read that sentence literally. I woke up and was startled to realize that I could stand and walk. I toddled out of bed and to the bathroom feeling like I was balanced on stilts…and I was scared as hell the whole way.
Mind you, I have absolutely no reason to feel like this. My MS has not progressed in any way that I’m aware of. I was able to walk around without thinking about it last night. So why, suddenly, am I stunned and afraid of the idea of being able to stand and walk today?
This is just one of the absolutely bizarre neurological effects of MS that randomly take hold of me on an almost daily basis. The effects can be as varied and unique as any part of the human brain can be from another.
For instance, emotional effects: I sometimes suffer from baseless bouts of weeping, or instant and extreme irritation that come and go with no basis in others’ behavior. It’s taken all of my coping skills and best adult behavior to keep from snarling…actually snarling like an animal…at the people I love the most, and for no reason at all. I’d understand getting a bit testy with my loved ones if they did something difficult, especially in this changed and charged environment of coronavirus lockdown and racial injustice. But my family and friends are mostly being really lovely about this, and even their meltdowns have been understandable and–it sounds strange to say it this way, but the words escape me to write it better–sweetly engaging.
It’s natural to extend loving arms toward my friends of color, and it’s a release for us both to share tears together. I can listen with a heavy heart, and am grateful to be the listener. I can’t directly change the situation as if I had some kind of giant magic wand, but I can do my part, and it’s easy to love my friends in their moments of difficulty because they’re wonderful people.
It’s natural to feel my heart swell with compassion when my daughter is having trouble being cooped up away from her friends. I can be there for her with a whole heart, and am glad to do it. I can’t do anything about the situation, but I can do my part as a mother, and it’s easy to love my daughter in her moments of difficulty because she’s discovering them for the first time, and it’s a territory I know well. And I’m grateful to be able to talk her through them.
It’s natural to feel tenderness and gratitude for my essential-worker husband as he sighs when it’s time to go to work. I can hug him until the tension in his back and shoulders softens, and I’m glad to do it. I can’t do much to change our situation, but I can remind him that he’s loved, and that there are a bunch of people praying for him to come home safely. I’m glad to make his life as easy as I possibly can in this strange situation.
But there are days that the gratitude and ease aren’t there, even for the people I love, and sometimes even the things I used to enjoy scratch at me. There are days that words of love make me want to hit someone. That may in part be the stress of watching the United States lose its collective goddamn mind, but I’ve personally endured much even before this year. I should be able to handle this better. And most days, I do. But sometimes I feel as if my brain has turned into broken glass, and every thought is agonizing. That isn’t stress talking. That’s MS.
How do I know?
Sometimes the language effects hit: I suffer from loss of words. That’s terrifying for anybody, let alone a writer. While thankfully it’s not a complete inability to talk–or a complete loss of language even in my own head–it’s still disturbing to reach for a basic, everyday word and find only a blank slate where the word used to be. I can feel its shape and emotional heft in my mind. I know for a fact that the word exists and I used it earlier without difficulty. But suddenly the word itself is reduced to a locked-up sensation in my tongue and throat, attached to a floating emptiness in my skull that’s the exact shape and taste of the word I’m missing.
Especially in a clutch situation (like helping someone during a meltdown), I really need words not to fail me. But MS doesn’t take a day off, and some days…like today, after being knocked off emotional kilter by walking…I feel like the words I want to write are slipping under the furniture of my mind like black cats in a half-lit room, mostly eluding me but then biting when I grab at them. They remain stubbornly spread out in the room and circulating, as if they might be interested in food–I’m a writer, I wouldn’t write about things that didn’t interest me–but no matter how I rattle the treats bag, the biggest cats remain out of my reach. And even the littlest cats don’t want to come near, they’re just hungry.
The most alarming effects by far have to do with reasoning: I have thrown a steel fork in the garbage can but kept the used paper napkin in my other hand so I can put it in the sink to be washed. That’s funny to read, but it’s not funny to live. Because what happens if I’m making dinner and I use a hand towel to wipe up a raw chicken blood spill, then use the same towel to wipe down a dinner plate that’s wet from the dishwasher? What happens if, like today, I realize that I dosed myself on MS medication nearly 24 hours before I should’ve, just because I mixed up my days and then preceded to ignore all the signs that I’d done so? I’ve had to redo an entire month’s bill-paying session because I realized belatedly that I’d paid bills on a paycheck that hadn’t yet arrived. What if I do that again and don’t catch my error? I’ve been driving and missed a turn I knew well (and knew I needed to make) three times in a row. Missing a turn is okay, I just turn around and come back. But what about all the other driving decisions I make in even a short trip? Even something as simple as mixing up left and right (like which hand had the fork in it) can be deadly behind the wheel.
So now everything takes much longer than it used to. Every time I go to throw something away, I have to visually check that I’m throwing the correct thing away. Every time I take my meds, I’ll have to double-check the day. Every time I do the bills, I have to double-check the timeline. Every time I make a decision behind the wheel, I have to double-check that it’s the correct decision. Every time I console a friend or loved one, I have to make sure that the words I’m saying are the correct ones…and it’s already hard to do that in a charged situation, especially a situation in which I know I have big blind spots.
In short, MS has forced me to view every single thing I think, say, or do with suspicion and second-guessing. My life has become surreal, as if I can’t trust that anything is real or correct, as if I’m living Inception…and this is happening in the middle of the worst social upheaval since the 1960s, and the worst pandemic in a century. Literally nothing about my physical, social, emotional, mental, political, or financial life has remained unaltered.
Some days I literally ask myself, what the hell is real?
This post could very easily be tagged as part of my ongoing ramblings about the Eightfold Path of Buddhism. There are big elements of Right Concentration in here, plus fiddly bits of Right Speech, Right Thought, Right Action…because what I’m talking about is very difficult territory to discuss (and not just for emotional reasons). Altered states of mind are, by nature, not describable in everyday language. The unaltered mind is what we use to process language, and language is very literally what we use to process our experiences. How we choose to describe something changes that experience in our memories, and very possibly changes the trajectory of our future from that experience forward (a subject I’ve discussed before at length in Right Speech). So the language we use forms our experiences, our past, and our future, and is most difficult when being used to describe experiences that, by their very nature, want to remain formless. And this only gets more difficult when the language processes of the mind are altered by age or neurological illness.
One of the strangest things I’ve noticed about my experience of MS thus far is what I’ve come to call the “two-self” state.
In one state, I’m fine–moving and grooving about my day. If my parents ask me over Zoom how I’m doing, I chirp a good word or two and then launch right into our conversation. Same if my husband or daughter or a friend asks.
In the other state–when I actually focus on how I’m feeling, especially if an app demands that I list my symptoms–I often have to list problems with my balance, vision, stiffness, pain, bladder, bowels, the MS hug, headache, anxiety, shortness of breath, nausea, sleep issues, fatigue, depression, numbness, dizziness, brain fog, and memory problems. These things are all often low-grade facts of my life now, yet when people ask me how I’m doing, I’m not lying when I say I’m doing well. I really am. It’s just that, until I’m alone with a symptom tracker, I don’t focus on the things that are wrong with my body.
To be honest, I’ve been like Schrodinger’s cat since my OM diagnosis in 2016: both alive and dead at the same time. Except now I’ve evolved to be both living and dying at the same time all the time.
I’ve had a pretty much continuous low-grade headache for the better part of the last three months. I know this type of headache well; I’ve had it off and on since 2017. It’s not allergies or stress. The headache has a very distinctive burning feel, and it often borders into migraine or aura. It hasn’t yet been bad enough to warrant pulling out the abortive drugs–when the headache has been painful I’ve had no aura, and when I’ve had aura I’ve had no pain, and both parts must be present to warrant using a migraine abortive drug. Otherwise I just make do with the same old NSAIDs. But it’s unlike any other headache I’ve ever had in my life, and it feels as if my brain is being slowly eaten by progressively warmer acid. Sometimes it gets hot enough that my face, neck, and spine become physically hot to the touch. Hot enough that ice packs melt fast. Hot enough to register as a one degree fever with a thermometer. (Thank God I don’t have my husband’s job. With these fever headaches I’d be turned away from hospitals all the time.)
I’ve discovered through trial and error that I can make the headache come and go. If I focus on it, it strengthens. If I ignore it, it lessens…sometimes enough to disappear entirely. Emotion has nothing to do with it. I can be in a terrible mood, or a great mood, or a meh mood, and my mood seems to change nothing about the headache or my ability to handle it. And meditation can often make it profoundly worse, so I know that being in a calm state (or lowering my blood pressure) doesn’t help.
So if it’s not emotion or stress driving the headache, what the hell is? I mean it’s certainly MS at the base of it, but what’s the aggravating factor that takes it from completely ignorable to debilitating?
It’s focus. It’s where I put my mental attention. If I put my mental attention on what I’m doing instead of how, I’m fine. If I slip and allow even a bit of the “woe is me,” I hurt. Alarmingly, if I allow myself to slow down and become fully present and aware of my body and breathing (as I do in meditation), I can often hurt very badly indeed–sometimes dropping from “feeling fine” straight into migraine territory. There’s nothing like the headache I sometimes get when I try to meditate nowadays. It’s bad enough that I’ve become a little scared of meditating, and I’ve been meditating since 1998.
So how are focus and mindful attention chemically different in my brain? Why would meditation ever hurt? Why would positive changes in emotion not help? Why would focus be the only thing that changes my state? And, for that matter, what state is actually being changed? Does my body actually hurt this much all the time, and I only notice when I’m focused on it the way I do in meditation? Or does my body not actually hurt that much, and something about focusing elsewhere allows me to realize it? I usually wake up feeling just fine, but as my sleep self fades and my awake self comes on line, I feel my various infirmities coming on line with it…until this morning, when I actually woke up scared to walk.
My mother has also noticed that her neurological issues come and go, worsen and lessen, based on her focus. It’s especially difficult on the days that focusing elsewhere just isn’t possible. And yet, on the days that focus is possible, even the worst symptoms get markedly better if we can get some project to lock us into focusing on something else.
In my mother’s words, “It makes me wonder if the symptoms are even real.”
Oh they’re real all right. I’ve got the scars on my spinal cord and brain to prove it.
But how is it that I can live in two selves at the same time—a well-self and an ill-self—and experience both of them simultaneously based on where I put my focus? Does that mean my focus is literally more real than my body is?
What a mind-bender.
There are many more-intelligent people than I am who insist that nothing is real—that what we call matter is nothing more than slowed-down energy, and that what we call reality is nothing more than a giant hologram. Many really intensely smart people have insisted that it’s the meaning-maker inside our skulls (our awareness, our attention without our “I-ness”) that’s the realest thing about us…and that our bodies are nothing more than a dream. Tibetan Buddhists since…well, the Buddha…have called our bodies “wind horses,” implying that our bodies are nothing more than an animal conjured from dream-state-stuff. Our awareness just picks one and takes it for a short joyride that we’ve come to call “life.” It’s kinda nifty to think about, that our awareness tools around in our bodies for a while just for fun.
And then I share a Zoom call with a friend who tells me about how her husband and son were racially profiled by the cops, and the only thing that got them home safely was the direct intervention of white folk on their behalf…by pointing out the actual facts of their cases. Without those white voices, the facts would’ve been ignored. Deliberately. Just to throw a black man in jail.
It’s so goddamn hard to think of my friends’ lives being a spiritual “joyride” when their day-to-day experience involves so much real pain, real suffering, real fear…when the cops see them and immediately slot them as “dangers to society” based on nothing more than their outspokenness and the color of their skin. My friends are homeowners with successful businesses and multiple college degrees on their walls, pillars of their communities for decades, as law-abiding and upper-middle-class as it gets…
So, for them I have to ask…what the hell is real? How can these amazing people be in such fear for their lives? How can cops ever look at them as threats, when all they did was open their mouths to speak the facts? How can so many cops be so good, and so many of the people behind the same badge be so very, very bad?
What. The. Hell. Is. Real?
I’m not asking that because I doubt my friends’ stories. Not at fucking all. I’m asking that question based on a fundamental shift in the country’s focus: for many people in this country, life three months ago wasn’t fundamentally different than life three years ago, or even thirty years ago. The only things that changed were coronavirus lockdown (which many people have been pretty good about, recognizing that such a thing hasn’t happened in a century, and everyone should be cut a bit of slack for)…and George Floyd.
The country’s life didn’t fundamentally change. But for damn sure our focus did.
Our focus right now as a country is on how ill our democracy is.
Our focus is on how much we goddamned hurt.
Our focus is on being incredibly mindful of all the insults and injuries and injustices that all people of color endure on a daily basis in America.
And these are all incredibly important things to focus on.
But at some point we have to shift our focus off of how much we hurt and onto what we can do. Because our country is existing in the same two-self state that I am. Our democracy is sick from the inside out. And yet, even ill, we’re still the most powerful country in the world. The language we use to shape our dialog will literally shape our future. How we choose to focus our energies will determine whether we’ll see a true blossoming of American democracy (and this time for people of all colors, goddamn it!), or whether we’ll spiral down into a failed state. How we vote determines how we value human lives, especially those of color.
In the last few months, I’ve said some things to some of my oldest (white) friends that I would never have said while focused on the future. While I pride myself on my honesty, I can also say some astonishingly raw things under the influence of too much honesty…and when the people I’m confronting are used to saying evil shit, and deliberately traffic in it as often as possible, and already labor under too many illusions to have even a working relationship with the same reality as me, well…honesty doesn’t go over too well with them. I’m frankly scared that there will be an extended hell to pay as they feel free to pour shit all over my Facebook feed because I bit back at them (for the first time in years). And if I ever manage to bring those friendships back within hailing distance of…well, friendly…it’ll be the work of many more years than the ones I just flushed down the toilet.
Yes, it had to be done. I’m tired of being a door mat. I’m tired of being called a “libtard” for thinking that if I allow one group’s rights to be infringed upon, someday it will be everybody’s rights. And it’s very possible that my years of tolerating my friends’ bad behavior resulted in, ironically, their intolerance.
So what’s real? The years of friendship I just tore to shreds? Or my years of being too much of a coward to call out bad behavior when I saw it?
I have to focus on the future. We all do. Because no matter who we are or where we live in this country, we all have to live with each other. We have to work with each other. The things we say and do to each other now will ring for years to come. We’d better be sure that the things we say and do are good, strong, and true. Not easy and authoritarian…or easy and liberal. No platitudes. No bumper stickers. No slogans. No goddamn red hats. We have to say and do the difficult things, like have long hard talks with the people we call friends. We have to kill the Shirley Exception wherever we find it. We have to take the long hard look at our realities and see where they need to be changed…and do it.
We need to park our need for instant results and gratification, and slow waaaay the frick down, and get serious about double-checking everything we do as a society. Racism wasn’t built overnight and it won’t get dismantled overnight either. We need to make sure we’re throwing just the garbage attitudes and policies away, and that we’re keeping the things that are still solid in our democracy…and then we need to give those attitudes and policies a serious wash and dry, and then we need to put them away properly.
On the days that I focus on being okay, I am. On the days that I focus on being able to walk (rather than my terror at doing so), I can walk. What we focus on is what we’ll become.
And that’s what is real.