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.