• allisontgruber

That time I was blind for 40-some-odd years

Went to a Memorial Day/Graduation gathering this weekend. Sat at a table outside, in the garden, for a while before a three-year-old came to me requesting to play bubbles, and also “could you hold this snake, and this unicorn powder, and this bubble container?” And before the child requested me for a playmate, I sat with grownups, one a new grownup who I chatted with for a while as we picked at hors d’oeuvres. She had broken her arm, and was off work while she recovered from the injury. She spoke of the extensive limitations of being able to only use her left arm. “And I’m right handed,” she exclaimed.

When I had a chance to speak, I sought a common ground with this person. I told her, and others at the table, about the time I detached my retina and had to live face down (no, literally) for about three days or more (time is weird for me when it comes to events in the height of The Pandemic). And I told of having to live on my stomach, brush my teeth while bent over, so that my eye could heal properly from the surgery. “And I really feel, at least for a few days, I understood Disability.” The moral of my story, my suffering, was that these challenges should perhaps make us more compassionate towards fellow humans who cannot heal from their disability. “How frustrating it must be,” I said.

Later, mom (who’d been sitting at the table) told me my eyeball story made her sad. I did not tell the story in a sad way, just plainly because Hey! Lookit this now working eyeball! “Please don’t feel sad,” I said. “I am not sad about this.” (And I’m really not sad about the eyeball - it was scary, but it’s over, and a surgeon saved mein eye from perma-lights-out-style blindness in that eye.) Mom explained she was sad for all that I’ve been through, throughout my life, but more specifically in the past three years: cancer came back, Pandemic laid waste to a job I loved, dog died, retina detached, wife left, etc. Also, before the past three years, so much medical trouble. So much suffering. “It’s just so unfair,” said mom. “I don’t understand how so many things could happen to one person. It’s just not fair.”

When people say “it’s not fair,” an unhelpful response is “well, life isn’t fair!” Everyone knows life isn’t fair. When you respond to “not fair” with “welp, life ain’t fair” you’re just being a dick. So what I said to mom was “well, I’ve gotten through, haven’t I? I’m doing pretty good all things considered, yes?” She agreed though as a mom I know it must be tough to watch your kid (even if she’s a grown ass person) go through some gnarly shit like I’ve gone through some gnarly shit. More than most.

Per a child's request: carrying bubbles, unicorn dust, and a snake.

Reader, I like to connect things. I see patterns everywhere, and this has always been my lot: connections, patterns. My favorite “trick” as a writer is to braid in as much as I can into a single essay, to reify with each sentence that we are connected, everything is connected. And my physical suffering, and now my heart-suffering (divorce pain, nonmedical), connects me to the rest of the world, and all those in the world, who suffer.

I was angry with my body for betraying me all my life - from Scarlet Fever at seven to Metastatic breast cancer at 43. I have felt betrayed by my body which is the only body I will have in this life. And so it is hard to live within an essentially relied upon body with a mind that is angry at the essential body for getting sick, for breaking down, for growing old . . .

And now I see how silly that is, to be “angry” at my body. I need my body. I haven’t gotten to the “loving the body” state, but maybe one day I will. For now, this is how I see it:

I do not get angry at the many beautiful trees of my youth that have, in my Southwestern Absence, died from insects or tree disease. I do not blame the trees. Nor do I blame the bugs. I feel disappointed, but not “angry.” It would be ridiculous to be angry about such a thing – just as it is ridiculous to be angry at our human bodies. My body, my tree, has a disease. The arboretums are trying to preserve me, and God willing, I will be preserved for some time yet. I cannot be angry at the sick tree.

As for “loving” the body – for those of us born and groomed female in patriarchy, this is an extraordinarily impossible feat even in the best of health for we live, here in America at least, in a world where Companies, Organizations, and Governments have a very vested interest in keeping “us ladies” angry at our bodies, detached from our bodies, and viewing our own tender bodies as objects in need of endless improvement. Madness. I am angry at Patriarchal Belief Systems for making me, and so many other women, hate their bodies just because they are female bodies. But I’ve been banging on this bullshit since I became a capital F-Feminist in the 1990s.

I may never “love” this body, but what I do know is the suffering this body has endured has been a Great Teacher, and a source of strength. I have PTSD, much of it medical, and one of my triggers is doctor’s offices. Tomorrow, I have to see a surgeon about having my ovaries removed (to spare me a monthly injection for the rest of this human life), and when I get nervous about this (“this” being just going to the doctor – PTSD, yo. It’s a real thing), I remember the rest. “Remember that time you went blind in one eye and had to have awake-eyeball-surgery? Yeah, well tomorrow ain’t gonna be that. Not by a long shot.” So past suffering helps me get through the appointments necessary to manage my health conditions. I know I will come through the appointment, and I’ll likely not be blind (or anymore blind than I currently am – I am on the cusp, no joke, of being medically “legally blind” – sad, true, whatever).

I may never “love” this body, but I know I am not alone. Many humans struggle with the feeling that their mind and soul lives inside this pre-broken, tragically finite body of flesh. And I know that because of my extraordinary medical experiences, I possess a wisdom seldom possessed by Modern Humans merely in their forties.

I made this poster at 19. Prescient? Poster She Wrote?
I made this poster in the 1990s (part of a Feminist Collective). Prescient? Poster She Wrote?

When I was told metastatic breast cancer meant “incurable, cancer for the duration,” I had to (and still have to) realign a lot of my thinking. Luckily, I’d had breast cancer before, back in the earlier aughts, and so I had some context. And yet I had no context. Because what an MBC diagnosis usually means is “you will die of this, possibly soon, possibly less soon.” Well shit, folks, you gotta die of something – usually cancer, heart attack, or stroke, or if you are an American child, a bullet – though I am sorely disappointed this “fatal blow” has come so early. I am about three years into metastatic cancer treatment. I feel pretty good. Tired, mostly. Roughly 12 - 15% make it to year 5. I don’t put much stock in stats as no one has ever asked me, and I’ve been dealing with this bullshit upwards of 10 years now. Fuckin’ cancer.

There was no family history. There was no BRCA gene. There is no one and nothing to blame, though mom and I wonder about a fertility treatment she took to have me back in the 1970s. There is no one and nothing to blame. Every answer as to “source” would be purely useful for continued treatment. The cancer is a random fire. I lived through fires in the Southwest. I never was angry at the fire itself. Sad at the origins, but the fire itself was simply doing what fire does. My doctors are fire fighters, trying to extinguish and contain the flames.

For my part, I try to eat healthy. I don’t drink. I don’t smoke cigarettes (though I did enjoy the most wonderful joint, al fresca, this weekend – every so often, your girl likes a nice joint, and will accept such items as gifts). I don’t “party.” I take my meds (so many I had to get a Grandpa Pill Sorter). I make my appointments. Maintenance of health – physical and emotional – has been its own full-time job from the get of this whole debacle. But thanks to modern medical care, to modern medication, to Buddhism, and meditation, I still have a lot left to give.

When I was in Tucson, working with little-littles (middle school), I learned something invaluable, but so painfully obvious: we are having our life even when we are suffering. I used to think of “suffering” as a kind of pause to capital-L-Life, and it can be that, however I was spending so much time in Suffering Mind that I struggled to see the rest of My Life. My middle schoolers, especially my 6th and 8th graders, had been through too much. We did the math in 6th grade one day: since beginning school in pre-k, they had been out of brick-and-mortar school for 15% of their lives. And they were only eleven or twelve. And yet, though we adults worried so, they had their lives, and they did all the things that all young humans have always done, and they played, and they teased, and they laughed. Granted, it is true that Pandemic Students struggle far more in a classroom setting than we teachers have ever before seen, but strip that away and you just have Little Kids living their Actual Lives.

And when the students taught me this, through their ways of being, I would remind them – all middle schoolers – you are not “waiting” on your life; this is your life. Because I wanted them to always remember this, more than I wanted them to remember the dates of World War I, or the difference between a dependent and independent clause, or how to spell “revolution” – I wanted them to know what I did not understand when I was their age, “This is Your Life. And it’s happening even when you’re sad, or scared, or just plain miserable.” We tend, I find, to downplay the fact that children are humans living their lives, and everything we (the Actual Adults) say or do to them, in ways large and small, shapes the course of their Actual Human Life.

Also, I wanted my students to be happy. Happy students are better learners, and moreover, I wanted their lives (which they were living in my classroom, under my direction) to be happy lives. I didn’t want them to grow up believing the only way to relieve suffering is through a good drunk or a hard high. I didn’t want them to make the Greatest Mistake, to miss the joy and wonder of Life, to allow the many sorrows (and in America there are so very many) of living to eclipse all that is equally good about Life.

I wasted so much of my life on fear. On worry. On an imagined future that was never really to be because you cannot, contrary to the Myth of Meritocracy, will yourself into the American Life of your desiring. I wasted so much of my life on desire for things I could not, or should not, ever have. Madness, reader. It’s madness, I’m tellin’ ya. And I never wanted my young students, bearing the brunt of all our American Adult mistakes, to give too much of their life away to fear and desire when everything they needed to be happy, everything I needed to be happy, was right there. Always is.

One day at a time. This is how I have to take my life, most of the time. Like a pill – one swallow, next, swallow – sometimes moment-by-moment. The Ascetics first taught me how to do this, then I let Buddha take matters from there. I work, and it is work for me, everyday to stay in each moment, to let time happen, to not try to fear and fight my days away.

Thanks to mom, I have a robust herb garden growing on my patio. I go out every morning with my coffee to water or mist the plants. Maybe I will pinch off a little lavender, and a little pineapple mint, and rub them between my fingers to smell the scent of fragrances mixed. Maybe I will sit down beneath my plants, and read this crazy book about the 14th Century (A Distant Mirror). Maybe, if it rains, I will go to my living room (which is like 70s rec room meets Literary-Buddhist-Hippie temple), and play Wingspan with the solo deck while listening to music that sounds good to me. In the evenings, I’ve been experimenting with vegan “snack” recipes. My sweet tooth is out of control, and too much sugar is bad for all humans.

I am learning a new way to live. I am working on patience. I am working on being kind to myself because I haven’t allowed myself to be kind to me for many, many years. And I am accepting, with Loving Kindness, the ways which I will always be different from others, and the ways I will always be exactly the same.

The woman who had broken her arm didn’t seem to take my meaning when I told her about my eye, having to lie on my stomach for days, sleep with my head dangling off the bed (didn’t sleep much that week). The point was not “Ouch!” my point was, “Doesn’t it make you think in new ways?” She went on to draw attention to the arm throughout the evening. And this is fine. She needed sympathy, empathy, compassion. I watched my aunt fix her plate, saw my three-year-old niece plant a gentle kiss on her bandaged wrist, and throughout the dinner, the woman listened to the conversation and at times laughed. This is why social events remain important for the human animal – for some of us, it’s the only time we get to be distracted from our suffering. As for me, I’ve had the good luck to have time to learn how to escape my suffering without any sort of big “distraction.” Frankly, these days, I am really enjoying my alone time. Haven’t had alone time, or much less any sort of vacation/break, since 2019. When I start to feel guilty for having that time, I tap into my empathy reserves, and hand some off to myself.

Be good, hooligans.

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