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.