During our weekly Zoom call my dear mother said she read my post about our broken patio umbrella, and offered to buy me a new one. I could’ve explained to her that the warranty process is important, because I had spent $6 on the policy for the $49 umbrella, so goshdarnit, the warranty people were obligated to fix this problem. Her argument was that her girl just wants to sit outside comfortably for the last few weeks of her life (so buy another gd umbrella already), while my argument was that now is still a fine time to operate on principle. Principles, mother! But instead of carefully explaining my rigid logic in the face of her kind offer, I merely winced, shook my head, and changed the subject, in a superb display of 40-yo teenager.
​
Apparently, even after all this, I’m still learning how to receive, too. Meanwhile, John became a different sort of mama bear when he finally got on the phone with the warranty people and roared about how difficult they were making this process. I was shamelessly grateful for the privilege of having a straight white dissatisfied male husband, because I knew if even he couldn't get the attention of the Supervisor, no soul on this Earth ever would, and I could finally surrender to the disappointment of having a $6 warranty worth absolutely nothing.

My takeaway from this week? There are such diverse manifestations of true love.

***

Speaking of receiving, other noteworthy recent experiences include letting one friend give me a head massage, letting another give me a foot massage, and letting another wipe my runny nose and hold me as I mini-wept. All they required from me in each case was saying yes, yes, okay, yes. I accept.

***

With only two weeks of food, water, and appointments left, it’s hitting me that I don’t have much time. I’m quickly approaching the point where I need to create an auto reply on my email and put my inner people pleaser to rest. “But what if people take my non response to their messages personally? What if they think it means I don't care about them? What if they--gasp--decide they don’t actually like me after all?” The opportunities for working with one’s childhood stuff never ever end.

***

Some numbers:
In the past few years, my favorite method for dealing with my free-range social anxiety at any given time is to delete 10-20% of my Facebook friends. I typically choose those who I don't actually know or haven’t heard from in a while. Unfriend, unfriend, unfriend. It’s a poor strategy though because unless someone is unapologetically racist or a vitriolic anti masker (unearthed courtesy of 2020), I usually end up regretting it. Like all good addictions/compulsions, it’s a control strategy with diminishing returns. My last purge-trance included over 200 mostly innocent souls and felt cathartic at the time, but was ultimately guilt-inducing. Plus, I’m pretty sure I now only have like 27 friends left, which is kind of embarrassing. And therefore increases my social anxiety.

What’s even more regrettable is that roughly half of my remaining friends are psychotherapists, which means I’m about to receive a bunch of PMs expressing concern. We then come full circle to the question of how I respond to more messages than I can handle. So it’s official, the universe does have a sense of humor after all.

***

The Serenity Prayer invites us to accept the things we cannot change, find the courage to change the things we can, and express the wisdom to know the difference. Here’s some of the things I cannot change: the past. Acquiring a disease for which there is no viable treatment. The momentum of my karma until this moment. The fact that Marjorie Taylor Greene walks this Earth the same time as I, and made it to Congress. Other people’s thoughts, feelings, and actions, including whether they trust I value them even if I don’t always acknowledge their kind messages.

Here’s what I can change:
My responses to everything I cannot change. How much water I drink and slow breaths I take. Whether or not I choose to ask for help, or receive it when offered to me. How I redirect my mind when I want to catastrophize the state of the world, or my cat’s health, or running out of my favorite flavor of Coconut Bliss. Whether I feed my cynicism or feed my creativity. The conception of the God I pray to.

***

My gratitude list for today:
Portable fans on a hot day, and the electricity to run them. A 12-yo nephew who gives me hope for the future of humanity. My kind caregivers. My mother who taught me how to love houseplants and gift-giving, and my father who gave me good hand-eye coordination, a tender heart, and an ability to find religion in nature. Having clean water and sheets. The potential of fungi restoring this Earth someday. Monkeys who hug, and photographers who capture it.

***

*All individuals referenced in this post approve of this message.

Photo of monkey hug by rabe dirk wennigsen, pixabay

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

​

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.” 

It's okay.
You're not alone. 

Most people feel some ambivalence about changing a long-standing behavior, no matter how much it could benefit them to do so. It doesn't matter if the behavior relates to alcohol, food, exercise, leisure time, or anything else; the change-making process works in predictable ways. It makes sense to want to explore the reasons for the change, the potential consequences, and likely outcome before committing. There's a good reason for this: the behavior is serving a purpose (or at least was at one point!) 

Some reasons that people drink include:

*to relax
*to connect more easily with others
*to have fun
*to celebrate

Drinking for these reasons, for many people, are not necessarily a problem. Alcohol is used so commonly throughout time and across cultures because it's effects are predictable and usually enjoyable for most people. However, some people find that drinking becomes a way to deal with life's stresses or to forget pain. This type of drinking can bring more questionable consequences, especially when the pain or stress are not dealt with directly through healthier means. No matter the reason for drinking, some people find that it can lead to:

*risky behavior such as driving while intoxicated, or unsafe sex
*being loud, hurtful, or obnoxious with others
*losing sight of values such as self-care, healthy relationships, work goals, etc
*a lost opportunity to learn more direct and healthy coping skills
*increased tendency toward depression
*loss of self-respect
*negative impacts on important relationships
*health problems (present or future)

If you're considering changing your drinking behavior, but don't feel ready, that's no problem. Most people who successfully cut down or quit drinking entirely went through a period of questioning what it would mean for them, and the likely outcome of no longer having alcohol in their lives.

Many people have questions such as: 

"How would I have fun without it?"
"How would I unwind without it?"
"What would my friends, colleagues, or family think?"
"What if it hurts my relstionships?"
"What if I don't know how?"
"What if I can't?"

 I find it's helpful to explore in detail with my clients:

*what is helpful or enjoyable about the drinking
*what the potential reasons for quitting or cutting back might be--whether related to health, finances, relstionships, values, spirituality, work, or self-esteem. 
*what the benefits might be
*what's gotten in the way of changing the behavior so far 
*how life might be different in 5 or 10 years if they continue drinking at the current rate, and how it might be if they stopped
*how it might affect important relationships
*what else might be needed in place of the alcohol (alternative pain management techniques, grief or trauma work, healthy coping skills, different options for having fun, relaxing, and socializing, etc)
*treatment options that may be helpful

Usually, after these questions are explored in detail, those I work with have much more clarity about their relationship to alcohol, and whether or not it makes sense to take any further steps to pursue a change. 

If you're interested in exploring your relationship to alcohol without feeling pressured to "hurry up and change", I'd be happy to talk more. 

Teri

Teri Dillion, MA, LPC, LAC