Content warning: religion, suicide, profanity, cupcakes
The good news is I chose well in keeping all 27 of you as my remaining Facebook friends, because since I announced my plans for my life-ending fast, I’ve only gotten love and support in return. Not one of you sent me threats of eternal damnation, so that’s a definite win.
But earlier this week my rally of support was pierced by my hospice CNA--- or more specifically, by her brand of Catholicism. Once she learned of my plans to hasten my exit on my own terms, her usually warm and sunny demeanor morphed into a frozen lake of disapproval. Gone were her easy chatting, eye contact, and offer of my optional sponge bath, replaced only with her hard silence, set jaw, and after washing my hair, a curt exit. She didn’t even laugh at my jokes, though I’m pretty sure they were above average for a Monday afternoon.
I get it, we all have our different beliefs, but a punishing God simply isn’t big enough to preside over every situation. And sometimes Jesus’ most outspoken followers are the least capable of understanding his basic teachings. In either case I suspect whenever our rigid morality outweighs our human compassion, we’ve lost the thread.
This same Monday, six days before I was scheduled to start my fast, my industrious nurse friend Sarah found out I’m actually still eligible for Medical Aid In Dying (MAID). It’s the Colorado law passed by voters in 2016 which gives us “6-months or less” folks the option of a humane death instead of being forced to allow our diseases to ravage us slowly and painfully. The doctor who told me two years ago that I was ineligible because I couldn’t hold the cup of liquid medicine myself was simply wrong. Ah right, yet another reminder to-always get a second opinion, and push back when need be. .
So here’s what this means in plain terms: I now have the option of forgoing the fast, which would have likely involved a dreaded catheter, uncomfortable bed pans, a growing constellation of pressure sores, the unknowns of coma, the not-small side effects of painkillers, and the hunger, thirst, and potential (however small) for unanticipated suffering for however many weeks it takes for my organs to start collapsing. Instead, now, I could wake up on the day I’ve chosen to be my last, eat a nice breakfast, have a little visit and ritual with the friends/family I’ve invited to surround me, drink a strong med cocktail in pineapple juice, fall asleep within minutes, and slip into the spirit realm within thirty minutes to three hours.
But before you conclude this is a no brainer, please know I harbor generations of residual Christian guilt in every last snippet of my DNA, and am also a very good Libra. Doubt and martyrdom are my birthrights. “Wait... I’ve survived lots of suffering already, why settle for bronze when I could go for the gold? Should death be so easy? Isn’t this too abrupt? Will it shame my family? Isn’t it technically suicide, and wouldn’t it therefore cause people to judge me as weak, amoral, and ungrateful? Wait, AM I weak, amoral, and ungrateful? ” Such fun questions, and good examples of why psychotherapists the world over will always have work.
Here’s the counter questions Sarah asked me as I was contemplating all this, reprinted with her permission. “What makes suicide suicide and why do we judge it? Does suicide suck because it was secret and there was no conscious goodbye? Does suicide suck because loved ones are left behind with questions that can’t be answered and feelings of guilt and shame that they caused suffering? Does suicide suck because we are afraid of death? Does suicide suck because a moment or period of trial leads to a reactive decision with an irreversible consequence?”
Okay, these are even better questions. I suspect, in most cases, the answers are yes, yes, yes. So, what if we could take the taboo out of discussing suicidal thoughts, intentions, and urges? Let the question of morality sit this topic out for a minute. Isn’t speaking frankly about the forbidden thing the best antidote to shame and loneliness, both of which breed despair and impulsivity? Might allowing ourselves to be witnessed in our naked despair, exhaustion, or just plain doneness be an expression of strength?
Sarah continued. “This I know….You have a terminal diagnosis and continue to decline. You are consciously saying goodbye. You are choosing your time to leave mindfully and honestly. You are not running away from hardship or suffering, you are running toward what you know is next for you… and you are bringing people along in your process.”
You know those moments where someone reflects something kind, obvious and yet strangely novel back to you *about* you, or about life, and it opens a new wing of your mind and heart? That’s either a sign of good psychotherapy, or good friendship.
So yes, the plan has changed. I am now set to receive the medicine* by courier on October 13th, near the date my heart would have likely stopped from the fast, though when I drink it is entirely up to me. In any case. I’m seeing how my people and I can build ritual into this exit, so it feels just as alive, measured, and sacred as any other big life transition properly honored.
I think magic is the ultimate result of equal parts presence, reverence, intention, good relationships, and good lighting.
*Still searching for the proper name for the drink. Persephone’s Potion? Death Cocktail? Witches Brew? Libation of Transformation? Liberation Libaton? Peace Out, Bitches? So many possibilities. .
As for the question of how to do the seemingly impossible next thing, I’m betting, like literally everything else in life, its just one step at a time.
Pre memorial memorial with closest friends? Check.
Goodbye zoom calls with faraway family? In progress.
Canceling monthly subscriptions? Check.
Completing crucial amends? Check.
Passing along logistical info, updating the will, ordering a last minute gizmo for the cats? Check, check, check.
Believing my therapist when she tells me that it’s okay to show myself mercy, which by Its very nature isn't concerned with being “deserved” or not? Check.
On that day I choose in mid October when my people are gathered, I’ll be dressed in my favorite outfit. There will be flowers. Someone will bake apples so the house smells sweet. Someone will bribe cats into my lap with treats. John will fuss over me very pointedly, because he still can. I’ll implore everyone to try one last time to capture the first decent, maskless photo of me in years.
When we’ve all emotionally arrived and relaxed, and the time is right, we’ll prop me up in my hospital bed. We’ll light candles. We’ll call in my well ancestors and guides. We’ll read poetry. We’ll cry. We’ll share our prayers and intentions for each other. We’ll hold hands, and maybe for once it won’t be awkward.
At some point I’ll ask if everyone’s ready. I’ll ask myself if I’m ready. In my nervousness I’ll try to make a joke, and my people won’t laugh, but will smile with sparkly eyes, I’ll tell them each that I love them, again, and to remember to look for me, again. They will nod and squeeze me and murmur sweet things. We’ll enter further into an altered state. The air will grow thick with a potent presence. I’ll feel into the silence and wait for the invisible signal. Maybe my heart will pound, or maybe I’ll be euphoric and calm with one foot already in the next realm. And once it feels like I’m called, I’ll find just enough trust, and nod that I’m ready.
Glug glug glug, down the hatch. John will wipe my chin one last time. I’ll lay my head back and feel the rush from knowing I can’t take it back. There might be an opportunity to panic here, to question the decision which is now irreversible.. But I’ll remember to breathe because I’ll have instructed my people ahead of time to remind me, and cheer me, and beam broad lasers of love from their broken open hearts to my broken open heart.
I will fall asleep. In that timeless space, maybe I’ll remember how to surrender. Maybe I’ll make peace with the reality that Earth is no longer my responsibility or my burden, though I love her so. I’ll feel the conflicting forces of attachment for everyone I’m leaving, and hopefully---hopefully--- trust in the goodness of what’s next. And soon I’ll remember my true name, and chuckle at myself for ever having forgotten.
Meanwhile my people will whisper, pray, enjoy the silence. They will watch my breathing for changes. Eventually, someone will be the first to use the bathroom, or step outside to watch the leaves fall in fresh air. Someone will be the first to eat a baked apple, and in my fantasy they will enjoy the earthy goodness so much that they weep with a sudden overwhelming gratitude.
As I’ve settled further into this new plan over this week, I’ve grown increasingly relieved, even joyful. Some of you might remember I wrote in my memoir about the night, just a few days post-diagnosis, I had a visceral, full-body experience of falling freely through space. Many seconds later I realized that instead of clenching my body in terror, I could simply relax and let myself enjoy the fall. I never did hit any ground---instead I was suddenly released from the whole sensation. Now I understand that this experience foreshadowed my descent into paralysis, and now death. The truth is I was safe to relax all along. It’s all okay, and always has been.
So would you like to know what you can do for me? When you finally hear the news that I’m no longer embodied in this realm, I’d love it if you became outrageously, shamelessly joyful, even if you also weep.
I’m still hoping someone will eventually take a decent, unmasked picture of me that I’d want to share. If not, and barring some irresistible last minute inspiration, this will be my final post. I know now is the time and the season to get quiet and turn within, to rest after a season of so much activity. In either case I’ll remind myself. I’ve already said enough (though it feels like there’s always more to say, and I’ve already done enough (though it feels like there’s always more to do).
This is a post where I can’t interact with comments, so I’ll simply practice receiving in the coming days. Here’s a bunch of love hearts in advance, to be doled out in an equitable and satisfying manner for all involved.
More of you than you know have taught me, in whatever small or large ways, how to become a decent human being, and how to wear grace well. My gratitude is a deep and large sea.
Until we meet again, please forgive me for lying about cupcakes ~
It’s Thursday afternoon, I told you all I’d write when I could, and I’m having a nice moment of clarity between my mind altering painkillers. So here’s what’s happening.
My caregiver Sharon is making deviled eggs, a food fit for the gods, which makes their name especially playful. It’s too hot to go outside so I’m sitting in front of the swamp cooler, combing through the twelve half-formed essays I’ve groaned over, wondering which one I could coax to life. Topics include, What to do when your planned life-ending fast will likely coincide with the first day of your period, when you reliably crave nothing except two burgers medium rare and a side of refrigerator? Who’s braver, those of us now choosing to leave the world of extreme weather events and Tucker Carlson, or those of you who stay? What do you do when you realize your abusive Buddhist teacher who was wrong about many things was right about ultimate reality being perfect and trustworthy? (My answer: relax.) And so on. Emily Dickinson told us to tell the truth but tell it slant, but finding a satisfying slant is the real trick.
Here’s what I know: my emotions---both joyful and painful---seem to be growing more labile by the day. This means I’m learning to perfect the mini-weep, because the maxi-weep is tiring and messy, especially when you require another human's hands to tend to your streaming face. Also, when I wake up in the middle of the night with my first ever panic attack, studying pictures of monkeys hugging each other is a surprisingly grounding activity. And, morphine induced nausea is a real bitch, and best avoided. And it’s okay to still have regular moments of un-profundity, even boredom, even now. If I’m metaphorically giving birth to what’s next, there’s still no shame in admitting a sudden nostalgic craving for Taco Bell. And asking my willing friend (similarly disciplined for years to noble “clean” food rules) to pick it up for me is an acceptable thing to do.
Most importantly, it’s true that you can know the goodness and rightness of a big life decision, and still deeply mourn what it requires you to let go of.
A close friend of mine from post-college days in Flagstaff died early this summer. She was ill with metastatic breast cancer for years and things were getting worse quickly, so I knew it was coming, yet still was unprepared for the Facebook post announcing her heart had finally stopped in the ICU. My insides turned to hot mush, and I shook with bewilderment. My love for her became a flooding river, and I was reminded while weeping that heartbreak is a visceral, somatic experience.
For two weeks I was glued to all the pictures and stories her loved ones posted online. I searched for her, I ached for her. I wanted to find her alive somehow, somewhere. Then one day I found her, floating next to me in our innertubes on a slow-moving river in my heart. Please bear with me. It sounds sappy and poetic but that’s literally what happened. She was holding my hand as we gently spun in circles together, giggling in her bubbly, infectious way, saying “hey mama, I’m right here. We’re always connected. You can meet me here anytime.” And I knew it was really her, it was truly real. She’s even closer to me now than ever before. And I haven’t cried over losing her since.
I know it’s rarely so simple or easy. I know if she had been in my life routinely instead of it being fifteen years since I last saw her, it would require something else entirely to make peace with the absence of her physical form, her voice, or her smile. But I believe there’s a maxim here that’s useful for those of us grieving: instead of just being a platitude, the dead do live on, and we can find them as long as we can rest in our own hearts and call them to us.
Or at least this is what I’m telling my people. One thing no one prepares you for until you join the Dying Club and get the How-To manual is the guilt you feel at having to leave your loved ones behind to face this wild world without you. So I want to tell everyone that in the death of this body, I’m not truly going anywhere. It’s just that 'Teri' has never been my true name, even if I will still answer to it. Like I believe for each one of us, I was temporarily masquerading as a river, but only ever truly belonged to the big sea.
Photo of innertube by Vicko Mozara on Unsplash
First published on Facebook, September 4.2021
My calendar for the next month has filled up quickly. Nearly every day is already spoken for with friends visiting, zoom chats with family, nurse appointments, hair washes from my CNA, massages with the hospice volunteer, or the occasional days I’ve blocked out for John alone. And then I scroll down to October 3rd, and suddenly there’s a bunch of white space. No wonder i have that anxious, excitable feeling like I’ve been strapped into a rollercoaster and it’s starting to click up the tracks.
Meanwhile, I’ve been engaging in a power trip with the customer service reps who should be helping honor my warranty for a broken patio umbrella. Before any of you kindly suggest that I should no longer have to deal with such mundane crap, please know 1) you’re likely right, and 2) I’m still not ready to fully surrender this hokey pokey between Earth and spirit. The human experience these days is filled with bureaucratic annoyance and I only have about 29 days or so left to enjoy it. There’s only so much relaxing and love-and-joy accepting I can metabolize each day, and getting a wee salty with email reps seems to be a fine way to use up nervous energy.
In other news, a friend wrote last week to say what struck her about my October plan is that it sounds like I have no fear of death. Since then I’ve wondered if this is true,. It feels true, but I also know the forces of repression, bypassing, and dissociation are strong and sneaky, and I’m just as susceptible as any other Jane.. Might my cranky exchange with the umbrella warranty people be a sideways expression of terror? Or maybe it’s grief talking? Or would all reasonable people get upset when corresponding with an insurance provider who appears incapable of opening an attachment!?
I think it’s understandable to be afraid of death, and skeptical of those who say they aren’t. Fear of death is normal. Who wouldn’t be afraid of leaving the light of the known world for the great dark mystery? On this side of the veil all we “see” of death while still living---if we physically see it at all in this death-hushed culture---is a dead body. There’s no animating force left. Someone is there, and then they’re not. You used to have conversations, and now you can’t.. And if you try to keep having conversations with the deceased, and feel you actually are getting answers, you best be careful who you confess it to; there’s still judgment aplenty out there for cross-corporeal communication.
In any case I’ve noticed most people who claim they don’t fear death are still very much alive. You Scorpios out there---I see you---are known for waxing romantic about the beauty of death, but I’ve noticed few have jumped on my suggestions to honor that attraction by volunteering for hospice. Why is that? I’m not here to start astro-rivalries though, many, many people speak with bravado about death while still holding her at a safe distance.
Yet there's a subset of people who genuinely have little fear of the transition---and indeed, call it a transition instead of merely an ending--- because they’ve had an exhilarating near-death experience or they’ve had undeniable contact with those who’ve passed. In the majority of cases these experiences simply can’t be written off as wishful thinking---they are often life changing. And those of us who prefer the easier, softer way, may have ingested enough entheogens (or other psychedelics) to claim embodied knowledge that consciousness itself cannot be destroyed. (My current best understanding is that the aperture surrounding it simply changes based on conditions of “light.”) If you try to argue with those of us who’ve witnessed as much, you won’t get far. It’s like we’ve had our own religious conversion, and materialist logic is a flimsy adversary to what we know in our bones.
But here’s the thing. Despite my trust that consciousness will survive the death of my body, it’s not as if I know where I’m going in the white space of my calendar. There’s no Fodor’s Travel Guide to the other side, and the glut of pastel-covered books in the spirituality/metaphysics sections, while sometimes compelling, are heavy in anecdote by necessity and often conflict wildly in message. Perhaps the other side of the veil is meant to be a mystery, it’s part of the design. If we could define and measure everything about Source /God/dess/HP/The Universe, I’m thinking it wouldn’t actually be very divine.
So I want permission to fear death. I want permission to feel everything and anything at the end of my life, without trying to hold myself to inhuman expectations. Grief, joy, heartbreak, tenderness, rage, lust, loneliness, despair, confusion, contentment.. The whole human shebang. Artists want access to the full color palette to express the nuance of their visions. Shouldn’t the dying/living be given the same freedom and dignity in their emotional lives? God save me from having to be “positive” all the time, because doing so only expresses terror and contempt for “negativity.” And it’s hard to be around someone unfailingly chipper. Like those who claim they never get annoyed with customer service reps. It’s suspicious.
Even if I know the roller coaster is safe, my stomach is still gonna drop during the fall. My loved ones can walk me straight to the edge of my calendar, and even if I trust there’s loved ones waiting on the other side of the blank space to catch me, i need to be willing to leap from one grasp to another. There’ll be a moment suspended in air, right? How could there not be? Sarah, my beloved nurse friend who’s coming to stay with us in October, tells me she’s never once seen a hospice patient dying who didn’t have a smile on their face or a profound air of peace surrounding them. Maybe it’s even easier than I think.
In either case, I’m sure the next few weeks will uncover much more. I’m trying to remember Ii have permission to feel everything. Everything! Until I’m no longer in human form, I want to welcome the full human experience, as messy as it can be, sans judgment. Annoyance at Allstate included. Nervous excitement included. Big love, big tears, and hopefully big laughter every day. Thanks so much friends for coming alongside for the ride---you all have really been showing up, and I’m so grateful for the good company.
Photo of woman leaping by Sammie Chaffin via Unsplash
I’ve fully intended to slip out of my soul sack without creating any more waves of controversy on social media, and while it’s a noble intention, it’s not one I can heed today. I woke up with that itchy heat of frustration, knowing people I love and respect keep making the decision to not get vaccinated, while few have legitimate medical excuses for doing so.
I used to be vaccine resistant too, especially in the distracted days of college and grad school when I relied heavily on social media for my sources of news. My ability to tell the difference between legitimate reporting and opinion articles dressed up with anecdote and misinformation was poor. I didn’t know that most sources pushing anti-vax content could be traced back to opportunistic alternative health gurus selling quack protocols or questionable products, or simply seeking notoriety and attention far outside their field of expertise. It’s embarrassing to admit, but true. And because I’d already benefited so much from vaccines, and never had to fear, oh, say, polio, for example, I thought they were unnecessary. “Just not my thing,” I’d say. “I’m good, thanks,” never bothering to consider the ableism and privilege I was exercising at others expense.
Now, as I’m staring down the chute of the last 4-5 weeks of my life, watching people i love and respect assume the same---because why else would you refuse a free, overwhelmingly safe, effective, lifesaving vaccine in a deadly pandemic ---- i must step away from my attempts to slip out of this plane without creating waves.
I too, once believed I was immune to having the impossible thing happen. (Covid is far from impossible, but bear with me please.) If someone had told me before I was given my rare terminal diagnosis that I was a candidate, I would have shrugged it off. “I’m too healthy,” I’d say. “I eat organic.” “I’m in great shape.” “I’m young.” “There’s not much a little apple cider vinegar, sunshine, and meditation can’t fix.” And I wouldn’t have said this next part out loud, but it’d be lurking behind my other rebuttals: “Life threatening illness is not in my life plan anytime soon. I’ve got important plans for the decades ahead. I’m clever/strong/resourced/blessed/spiritual enough to avoid it.” Or if i get it,”I’m clever/strong/resourced/blessed/spiritual enough to beat it.”
Good grief, the arrogance. The anti-clever, anti-spiritual arrogance.
Now I’m seeing reasonable people talk about their “autonomy” and their “rights”, and if I still had the arm strength to scratch my head, I would. We are dealing with a virus that has already killed 642k people in this country, and shows no signs of letting up soon. I’m sorry, but this is an unfathomable fucking tragedy. Those people had families and dreams for their future, and I bet largely assumed they, too, would be exempt.. Of the survivors, near thirty percent have lingering, long Covid symptoms that may continue who knows how long. Children are now being hospitalized at alarming rates, especially in areas with low vaccination.
Meanwhile, no one dares protest that laws for public health preventing them from driving drunk or running red lights Impede on their “rights” anymore. You don’t have rights in a civilized society to endanger other people’s lives. Period. And make no mistake. If you’re choosing to not get the shots , your decision is not personal. You will get covid if you haven’t already. It’s just that those of us who have the vaccine will not be the ones clogging the ICUs, taking up space, resources, and skilled attention of doctors and nurses away from people who didn’t choose their illnesses or accidents. We won’t be leaving our families with the complicated grief., guilt, and anger of knowing the whole mess could have been avoided with some shots that left us with a headache and sore arm for two days.
Please know, as an act of love, I’ll swiftly delete any YouTube conspiracy theories from the comments. Don’t bother mentioning ivermectin, or chlorine dioxide, or hydroxy-whatever (whatever happened to that miracle cure anyway?) It’s all BS. The only people we should be listening to right now are doctors and nurses exhausted from dealing with this for eighteen months, epidemiologists who actually know this stuff, legit journalists, and the hundreds of thousands of families in this country who have already lost someone to this wretched virus. They’re simply begging everyone to get the damn vaccine already. It’s very simple. Those that do can then rest easier knowing they’re no longer a threat to the public, their family, themselves, or our shared healthcare system.
I didn’t want to pull the terminal illness card. But I’ll rest in peace knowing I’ve said, don’t be so sure it won’t happen to you. If you’re unvaccinated and you already recovered fully from the virus, congratulations. I hope you haven’t unwittingly passed it on to others who weren’t so lucky. This isn’t about “rights.” It’s not only about you. It’s about being a decent human being who can recognize your own vulnerability, living among other vulnerable beings. I hope I don't lose friends from this post. I love you. But even worse would be losing friends from an entirely preventable illness.
Photo of wonder woman figure by Erika Wittlieb via Pixabay
First published on Facebook, August 20.2021
John and I have made efforts to share the news personally with as many friends and family as possible, so my apologies if you’re first hearing this now and wish it had come to you in a different vehicle. Go figure that I’m tasked with the most courageous conversations of my life when I have the least physical oomph left to muster. Nonetheless I’m now on the river with a quickly growing current, and this impulse to let my extended village swim alongside must be honored.
It’s now been four years since I could walk without assistance, three years since I could feed myself a sandwich, two years since I could string words together to voice a decipherable sentence, and one year since I could operate the joystick on my wheelchair well enough to gaze out the window when I so choose. I’m sure there’s new lessons I could still harvest from my unique embodiment if I tried, no matter my growing pain and tremors, my drool and sudden spasms, or my increasingly skeletal frame that’s now immune to comfortable arrangement. I could dig deeper and find more joy in the simple routines of the day and in the faces of those I love. I could keep hopping between my favorite islands of pleasure even as the shorelines give more and more to the sea.
And yet---mercifully, I believe---I have now reached a point where I know fighting to squeeze more life out of this body is not the most life-affirming option I have. Forcing myself to plod along waiting for “nature” to take its course would not be an act of self-love; it would be self-abandonment based primarily in stubborn fear. It would require treating myself with less regard than I believe our animal companions should be treated. The truth is I have nothing left to prove along lines of resilience; I’ve mustered enough toughness already, and have concluded grit born of necessity simply isn’t as heroic as we Americans like to believe.
Call it a “geographic cure”---I won’t argue at this point---I’m ready to travel, and have no shame about admitting it. Early this October, I’m planning to hasten my death by going to bed on a Saturday night and initiating a fast from further food and water. I’ll have hospice meds and tricks to help me with any thirst, pain, and anxiety that arises, but as my body grows weaker I’ll experience the natural analgesic (pain-reducing) effects and light euphoria of dehydration. Hospice nurses and doctors generally rate dehydration via this method (VSED: it’s a thing) as an 8 out of 10 on the scale of “good deaths.”
I very much want a good death. It feels like a special honor and fortune, especially considering the mass exodus humans seem to be making these days from this planet, often in painful, lonely, or wholly unnecessary (unvaccinated) means. I think what may make for a good death more than anything else is the extraordinary and rare privilege of getting to plan my final bow thoughtfully and carefully, with my favorite people given plenty of notice, and many of them physically at my side. While some say that dying randomly and peacefully in your sleep is the best way to go, I’ve grown to suspect that the experience I’m having, of intentionally reclaiming my autonomy and self determination from a brutal illness, choosing the conditions of my exit, and having conscious amends and goodbyes with loved ones is the most meaningful rite of passage I could have.
So please friends, don’t say I lost the battle with ALS. Yes, ALS fights dirty, but it hasn’t broken me. It doesn’t win anything. There’s power in conscious surrender. I choose. I win.
Here’s what should happen: by day 3 or 4 of my fast I’ll grow weak, and start sleeping for longer periods. Within a couple more days I’ll become unarousable as I slip into a coma. Because I’m still young and have strong organs, I may take longer than the average 9 days to slip out of my body. In the meantime I’ll have my beloved transition team making sure I’m comfortable, holding my hand, whispering sweet nothings in my ear like “it’s okay to go,” and “we’ll be okay,” and “we’ll vote in the midterms” and “we got this Earth thing” and ”fly, dear one. Just fly.”
Despite my readiness, I’ve realized there’s no way to *not* feel my death is too early in some respects. I know there’s 90 year-olds who feel the same way. Truly, when is it ever time to (seemingly) lose connection with everything and everyone you love in one fell swoop? Who would willingly leave behind organic tater tots, fur babies who purr and chirp like mine do, the genius metaphors spilling daily from an otherworldly spouse, or the chance for another guilty daytime round of the Twilight Saga? But perhaps such attachments are simply a measure of a good life. We all have our versions. I only know I’ve done the work I’ve been called to, learned over time how to treat others and myself with a little more dignity and consideration, and experimented with how to create, boogie, and rest in increasingly adaptive ways. I’m honestly not sure what could be better accomplishments, or make for a more complete life.
There’s been a couple handfuls of times in which I’ve felt a compelling, twinkling rightness of an impending life transition deep in my gut. I’ve never regretted the ultimate changes resulting from these times, even if the travel got a little rough in the liminal zones. In addition to the occasional weepiness of saying goodbye to who and what I love here, I’ve also felt the stirring, seductive excitement that reliably foreshadows my next creative romp. My ancestors are gathering to welcome and celebrate. There’s a sparkly quality in the air.
Before going to bed the other night, John sat down, sighed, turned to me and said, “it’s all gonna be okay huh.” And after pausing for a minute I was able to agree, “yes, I think it is.”
I was planning on having a juicy ripe nectarine as my last food on that Saturday night, until I remembered October is no longer nectarine season, which means I’ll be forced to settle for my next favorite fruit, tiramisu. Negotiation is the name of the game.
Speaking of fruit, I have a luscious and growing belly but I’m not sure what or when I’m expecting from it. I learned one way hospice staff gauge the nearness of death in the terminally ill is by measuring the transforming Buddha-ness ratios of one’s belly. I’m sure there’s a scientific explanation having to do with increasing fluid retention or something. Maybe I’m still overly romantic but I’m also wondering if those of us who get to this point are all simply preparing to give birth to what’s next.
The main risks of sharing such an intimate decision and process on social media---which I’ve decided include being judged by a mixed audience on a judgy platform, and getting inundated with messages I’m unprepared to thoughtfully respond to--are worth the opportunity to destigmatize and un-shame another aspect of (and option in) the dying process. I think it’s good for us all to talk openly about death, and be reminded there are resources for maximizing the ease and sacredness of the passage before the day comes (assuming we’re fortunate enough to have notice).
That said, my sharing publicly is not an invitation to approach me with advice, alternative methods, self help projects, miracle cures, or Scripture, but thanks for wanting to help. I don’t need unplanned distance reiki, even though I believe in palliative medicine and generally appreciate good vibes. Instead, I welcome expressions of warmth, understanding, humor (especially from fellow pALS, dark included), poetry, improbable cat videos or groovy song links. I’d especially enjoy voice or video recordings sent over Messenger, and already have a plan to binge my favorites in my final days.
In any case I’ll ask everyone who contacts me to please do so without expectation that I’ll respond in some significant way. My time and energy is limited, ultimately just like yours, but relatively, hopefully, much more so than yours. .If I reply to your heartfelt message with nothing more than a thumbs up, take it as a sign that I think you’re fantastic and will do my part to shower you generously with glittery soul pastries from the afterlife.
I’d like to share more observations as the weeks wind down, as long as I can find the will and inspiration. I hope it’s meaningful for (you) my friends to have a view of my river before your own nears the big sea. It’s certainly nice to be witnessed in my twilight---we should all be so lucky to get to share our last lucid weeks and days crying, listening, and laughing together.
Photo by charles Lebegue on Unsplash
The quote that follows continues: "... It seems the more permission we give ourselves and each other to have all the feelings and questions--without offering tidy answers to shunt the process--the more empowering it'll feel to define our own meaning, in our own time, as best we care to."
#autoimmunepaleo SPECIAL INTERVIEW // TERI DILLION
This is the second post in an interview series with @teri.dillion, author of No Pressure, No Diamonds. Teri has ALS and types using technology that tracks her eyes (#incredible), and we are running a series of posts featuring her insights into life, healing, and meaning under the hashtag #nopressurenodiamondsbook.
👉QUESTION: It is tempting to give tidy answers in the form of advice or seek tidy answers as a way to make sense of disease or gain control. What is the impact of getting sucked into the pursuit for tidy answers? What is the alternative opportunity?
👉Teri answer: “You named it: control. I think it’s natural, when something powerful and disorienting starts taking over our lives (like chronic/complex illness), for us to try to orient towards an explanation that comforts us. We all would like to believe if we do everything “right,” we’ll always prevail with the upper hand in our fate. Capitalism and advertising would have us believe there’s always an answer to what ails us, if only we make the necessary investment. But of course life doesn’t reliably offer tidy resolutions based on simple transactions; it merely continues to unfold in greater and greater complexity. I believe it’s ultimately up to us to mine it’s lessons, no matter the challenge or conventional success of the eventual outcome.
One important lesson of illness is humility, since it begs (and sometimes demands) us to slow down, turn inward, and listen. In heeding that call, we’re afforded an opportunity to learn of ourselves on a deeper level; our rhythms, needs, longings, hurts, and hopefully, our own resources. If we allow for it, we can become students of the power of impermanence, mystery, and grace, and we can learn to engage our relationships in a new, more life-affirming way. While this process is rarely tidy, it ultimately invites us to locate and define our own empowerment---and indeed a faith in our own vitality, no matter our physical state---that we’d never have found otherwise.”
Yesterday I started fantasizing about creating some grandiose post about how it’s so very un-woke for anyone to ever complain about turning forty, especially when it’s actually a huge accomplishment for some of us, and some people never get the privilege. But then I remembered competitive gratitude makes for tired tropes, and I’m sick of acting like a (cranky) inspiration mascot just because I’ve endured a wicked illness for longer than anyone expected, including me.
It doesn’t help that I’ve written a book that attempts to dismantle spiritual bypassing while also making a case for “gifts” coming out of illness. I’ll admit it’s been a tough needle to thread and most days I suspect I’ve failed miserably at pulling it off. Poor John suffers my mood shifts.
Today I cried, hard, because I want a haircut so bad. My mom took a picture of me and my pandemic hair and it’s a real catastrophe. I’m still struggling to accept that my mouth is so weak that I’m drooling in an increasing number of moments. The West is burning and it’s still a question for some whether or not Black lives fucking matter. JK Rowling has taken a swan dive into hate and Trump flags actually exist and people actually fly them. Days ago my friend’s kitten ran into the street and met a quick death, and she and her wife had to bury the little furry loveball in their yard, and sometimes I struggle to find any meaning in any of it and it sucks that no one, absolutely no one, has any satisfying answers.
In some moments I wish my powerchair had a super charged red eject button which could just pitch me into space beyond the gravity barrier so I can finally get some perspective, and float, and exhale.
But after the big feelings break through and I weep freely for America and kittens and John and my hair, it’s time for a sponge bath. And since I can’t take any more news because it’s 2020 we play good music and I get reminded that somehow, some pockets of life on Earth are still okay. After all these years Ani DiFranco still manages to name it like it is with a bebop to boot. Our space heater still makes the bathroom cozy and my exhausted husband still finds the energy to hum and smile at me while soaping up my limp arms. I can see the cottonwood leaves fluttering and yellow through the bathroom window and they are so beautiful and fleeting it hurts. And I already got to vote.
So I'll say if anyone else out there is feeling conflicted about the existential threat of turning forty when all currently available data hints you will likely live to eighty, sans paralysis, that’s okay. I’ll forgive you. Forty is an accomplishment, as is eighty, as is twelve, in this world at least, especially now. This shit isn’t for the faint of heart. I haven’t actually figured much of anything out about life but I think It’s fair to feel heartbroken and afraid even if things are generally working out personally, whatever that means---because we all know if things aren’t coming together they’re falling apart. Maybe if on some days we can only see the light reflected in tiny slivers in the world around us, that’s good enough.
One of the interesting things about acquiring a disability in adulthood is seeing how differently strangers treat you.
Once the muscles in my throat and vocal chords lost enough oomph to form clear words, most strangers started talking to me in a loud voice, assuming I couldn't hear, or with simple language, assuming I couldn't understand, or think. Some would not even bother talking to me at all; a certain percentage would ignore my personhood completely and instead speak about me in the third person to whatever able-bodied person accompanied me.
Other strangers assumed my body was fair game and boundaryless, and would suddenly reach out to stroke my face, pat the top of my head, or even suddenly lean in for an unexpected kiss on the lips. Can you imagine? Strangers! This is not something that strangers ever did upon first meeting me prior to my using a wheelchair---it's as if I lost my status and subjectivity as an adult.
To my surprise, I've found this to be the case with healthcare providers just as often. Sometimes they automatically yell, or patronize. Prejudice and confusion regarding physical disability runs deep, which is why we all would benefit from better education which helps us not infantilize each other. (FWIW, I most definitely could have done the same to others once upon a time---sans kissing.)
But this peculiar phenomenon is not unique to me, of course. This is a large, enduring trend with deep and ugly history in American society, where people with disabilities are feared, misunderstood, abused, or outright ignored in our desires to live a life in the public sphere with dignity. As a minority group who encompass 20% of the population---which you wouldn't know by watching media, where we are represented as 2% of the population, usually by able-bodied actors or models--- those of us with disabilities have a long way to go in securing visibility and representation.
This article, written by (my hero, badass) disability rights activist Judith Heumann is worth the read. Also, Netflix's recent Crip Camp documentary which features her work is excellent and worth watching
It seems many among my circle of contacts have noticed some demographics--mostly the young and sometimes the old--are failing to heed the urgent pleas to social distance as much as reasonably possible, and are understandably annoyed at the risks they take which threaten the rest of us and our shared healthcare system in direct or indirect ways. I get it. It is annoying, maybe even careless and selfish and blissfully unaware. But more than just those who can’t resist gathering with friends because they assume they won’t get sick, I’m seeing a more insidious and purposeful form of magical thinking sprouting up at the edges of the alternative health and metaphysical communities which has its own flavor of privilege and disassociation. It sounds like this: “germs are only real if you believe they are. You’re only susceptible to illness if your thinking is unhealthy and ‘low vibration’. Infection is not a real, objective phenomenon unless you buy into media/collective hysteria. Everyone should just relax, trust their bodies, and we’ll have no problem.”
Yes, research now suggests being in a chronic state of fear or worry can lower our immunity. Panic can cause us to lose our good judgment. Certainly, getting in a hair-pulling fight with strangers in the toilet paper aisle has its risks. Whenever possible and reasonable and appropriate to the situation, it is absolutely healthy to relax.
But what’s being missed in these “there is nothing to fear” scenarios is that fear still has a rightful role in the human organism. Animals have scales or fangs or claws, and humans have legs or wheels to distance ourselves from threats. These tools are self-protective, meaning they are designed to help us live for as long as reasonably possible among our herds or habitats. And, if we have paid any attention at all to the media reports of what is happening in other countries with this virus and what is beginning to happen in hospitals here, it’s glaringly obvious that a certain measure of fear, vigilance and self-protection is a healthy, life-giving response for ourselves and our communities.
Yesterday a friend shared a video by celebrity psychiatrist Kelly Brogan, who brands herself as “holistic”. I’ve respected this doctor in the past for her willingness to think outside the box of standard psychiatry to redefine the causes of mental health and illness. But during this video--which she created after being supremely annoyed her dance class was canceled due to Covid--she went on to say a number of things. One, she no longer believes in the reality of germs, contagion, or infection as an objective reality. Two, believing that it’s healthy to distance ourselves from others to slow a pandemic is a “childish” narrative, and three, we all are being asked to ”evolve” our ideas to see fear as the real threat to humanity, (Except for 5G, which for some reason was unique to pass the purity test of being fear worthy.) And that’s the point I turned off her video.
Having spent my share of time in communities of people hoping to radically heal chronic or terminal illness, I’ve heard this type of argument before. Common themes, often informed by a weird mashup of Ayn Rand-type extreme self-determinism and the purportedly channeled messages of ascended masters have these common features: “everything good or bad that happens to you is the result of your own (usually, psychospiritual or mental) state“, “there are no collective or systemic realities beyond what you give power to through your attention,” and, “you are actually in control of everything, and you simply have to use your mind as the all-powerful tool that it is to create your preferred reality." Well, with all due respect to the dreamers out there, barf.
Let’s put aside for a moment that most of these arguments come from people with a lot of privilege, who are usually white, relatively wealthy, and have grown up in western countries with decent infrastructure and public resources and opportunity. I can’t help but wonder how these theories would land with people in poor countries whose children are dying because of parasites and poo and whatever else in their drinking water, who would do anything for the “superstitious” hygiene protections and resources Western nations have--or who live even today in Flint, Michigan for that matter, or on under-resourced Native American reservations. Do they know how insulting it can be to have more white saviors lecture others on the need to outgrow “childish” concerns about health, to “evolve” into realizing their illnesses and pandemics have nothing to do with systemic or structural realities and actual germs or toxins, but instead they have “believed the toxins into being”?
If you’re so mentally or spiritually evolved that you no longer need to wash your hands and are exempt from pandemic, congratulations! But please keep your distance from my loved ones, and please don’t go spreading the virus of victim-blaming toward those who get sick by being a part of this big, wild, beautiful, tragic, interconnected planet. We no longer have the luxury to discard each other because we’d rather spend our time manifesting for our personal desires than paying attention to collective realities which are actually all too real for people, animals, and land. If you’re going to speak a good game of compassion and spiritual maturity; please live it. You’re not the only one here.
Friend, I’m really happy that you’ve found the magical cure to all illness, and it consists of a celery juice fast while plunging yourself into ice every morning and finally breathing like a real man. Yes, I’m probably not walking barefoot in virgin sand enough and maybe my shilajit is from the wrong side of the Himalayas. And no, I won’t forget what your cousin Jim learned on his last kombucha cleanse, and how I’ll probably learn the same thing, if I make sure to get the right flavor.
I know you think that if I, too, consume acerola-spiked gummy bears before my meals and listen to music only in the 532 megahertz frequency while chanting the original name of God, a prompt and total healing is in order. I do understand that it shortened your cold by two days and improved your dogs hearing within a week. I understand that if I only believed it with enough conviction, it would work for me.
You see, I’m not ignoring your advice because it’s ridiculous to compare your occasional experience of brain fog to my life threatening illness. Nor am I insulted by you thinking that what you learned from that 60 second soundbite on Lyme disease qualifies you to think you now have the answer to this layered, complex illness that I’ve been researching full time for two years now. It’s not any of those reasons that cause me to snicker inside from your well meaning advice. It’s because I tried all that already.
So for now, though it might not make any sense, I’m only taking health advice from my sickest friends. No, not the ones whose occasional tummy aches really cramp their hot yoga practice. But the ones who understand that even determination and fierce grit and critical thinking skills and open mindedness and endless research and good vibes and clean karma and the smartest freest-rangiest supplements aren’t always enough because if so, we would’ve kicked this shit by now.
If you’ve stared down a life threatening illness this wicked, and won, or are fighting with me, bring on the platypus elixir. I’m all ears. If instead you cured your athletes foot with high dose intranasal vitamin K and you intuitively know it’ll work for me too, do us both a favor and just tell me you’re thinking of me.
And one more thing: there’s no ”S" in Lyme.