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 strikes me that the holidays are as good a time as ever to talk about grief, and the holidays of 2020? Lordy, pull up a chair.
So many of us are experiencing the existential willies right now for obvious reasons, yet the loss of homes due to the growing climate disaster and loss of lives due to the pandemic mean an unfathomable amount of our literal and figurative neighbors are drowning in overwhelming pain right now. And I’ve learned the best thing we can do for pain is, first and foremost, acknowledge its existence.
When going through our own acute pain of losing my health and then losing our home and belongings, hubby and I learned firsthand which responses from others helped, and which responses left us with an even greater loneliness.
It’s worth noting that no one fully knows what to do with grief--our own or each others’--unless we’re shown. In the larger cultural pushes toward militant optimism--also known as toxic positivity--we all are encouraged away from acknowledging our wounds. We’re told to just get over it, or look on the bright side; we’re told to use the experience to springboard into a better life, or get busy creating a new reality. This would be great if such advice actually worked, but with complex or early grief, it rarely does.
In that spirit, I thought I’d offer some of what I’ve learned both as a therapist and grief survivor about the helpful (and less helpful) things to say to someone who is tossed about by acute loss.
First off, please, please say *something*. Even if it’s awkward, bumbling, and brief, your effort will be noted and appreciated. Don’t assume the grieving person knows you care without you saying so, or would be bothered by you acknowledging the loss. When a family member, friend, or coworker has lost something precious (their loved one, their home, their health, their pregnancy) and they know you know, your silence would be deafening.
If you don’t know what to say, try this:
“I don’t know what to say… But I want to say something.”
“I’ve heard. I’m so sorry.”
“I can’t imagine what you’re going through, but I’m here if you want to talk.”
“I care about you.”
Once we open the conversation, we may notice the urge to try and cheer the grieving person up. But if we investigate this impulse, we often find it springs out of our discomfort feeling our own pain. But I promise you, it’s safe to allow ourselves the occasion to feel our own heartbreak; the grieving person is handing you an invitation to not turn away.
So before saying the following:
“God/ Universe/ Source has a bigger plan,” or
“Everything happens for a reason,” or
“You can always find another spouse/have another child/rebuild a better home,” we can instead pause and try to empathize for another moment or two or hundred.
While these statements of faith may eventually prove true (I think few of us ever fully see the big big picture), and can feel comforting when someone arrives to these conclusions for their life on their own, they rarely comfort when lobbed toward someone freshly devastated. What’s more, they run the risk of dismissing someone’s pain, and may send the message that they should not indulge in so-called “negative” (read: difficult) emotions. Not only are fear, anger, sadness, shock, etc normal responses to loss, they will often hang around longer for anyone who feels it isn’t okay to feel or talk about them. And there is no spiritual wisdom in dismissing heartbreak, believe me.
Long story short, we need to first witness, meet, and hold space for each other in our full human emotional messiness. There will be time to harvest any silver linings later; as David Kessler asserts, finding meaning is the sixth stage of grieving--meaning a whole lotta other feelings come first, or at least come alongside.
If the ideas in this post are helpful, let me know, and feel free to share. I’d like to write a little series of posts on grief over the next month, getting more in depth about how to greet the grieving, and more on concrete ways to help. This collective storm will be more survivable if we all get darn good at helping each other through it.
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.
Internet addiction affects 1 in 8 in U.S., study says
It looks as if getting a text or the opportunity to search the internet sets off a dopamine surge similar to addictive substances. Read more at: http://www.thefix.com/content/digital-addictions-are-real-addictions
I wanted to share this post from Science Daily on how oxytocin (a hormone related to love and bonding) may affect one's likelihood of having a drug or alcohol abuse problem later in life, says researchers from the University of Adelaide:
Early childhood experiences impact our behavior, development, and sense of self and relationships in more ways than commonly realized.
Have you ever started eating something, with the intention to have just one piece or slice, and found that you couldn't stop? You might be surprised at how many other people have similar issues with food. Food addiction is real, and can wreak havoc on the lives of those affected. Fortunately, recovery is quite possible, and many people find that they can learn to lead sane and happy lives without excess or compulsive eating.
First off, How do you know if you have a problem?
You may be struggling with a food addiction and/or compulsive eating, if any of the following are true:
*you can't stop eating after being full, and sometimes eat to the point of discomfort.
*you never seem to know when you're hungry or when you're full
*you have regular bouts of guilt, shame, or self-loathing after eating
*you feel obsessed with what you will eat next, what you just ate, or how you will "work off" the effects of your eating
*you have strong food cravings
*certain foods seem to trigger more hunger, and you find yourself eating more than what seems reasonable
*you exercise excessively to "get rid of" (purge) the extra food. Note that this can be a form of bulimia.
*you have periods of restricting your diet, followed by periods of food free-for-alls. ("yo-yo dieting")
*you have become obsessed with different diet trends, including paleo, vegan, macrobiotic, or raw foods, and find these diet "rules" preoccupy you
There are certain foods that can trigger this type of behavior more readily. Many people have found that the following foods tend to lead them to overeat:
*bread products, including cereals and granolas
*chocolate or other desserts
*creamy, fatty foods, such as nut butters
*refined carbs, such as white rice
*sweet or salty foods that come in bulk servings in bags/boxes Example:chips, trail mix, loose nuts, french fries)
*foods with natural sweeteners, including energy bars
*alcohol consumption can also lead an otherwise normal drinker to overeating sugar or other foods
Food addiction appears to act as both a behavioral and a substance addiction. Some people find that if they ingest any amount of sugar, it serves as "an alcoholic food" for them, and triggers craving and obsession for more. While this is a contentious topic in the addiction field, many recovering food addicts swear by the reality of the substance addiction. For others, the behaviors around food have the most problematic effect.
Some common triggers for people to overeat, or eat compulsively, include:
*being too hungry
*being too tired, and thinking the food is necessary for energy
*being in a rush, and feeling anxious
*feeling anxious at a social event,such as a party or potluck
*social events where the focus is on eating triggering foods
*access to "novelty" foods, where it's easy to justify overeating
*having poor boundaries or ability to say "no" to offered food
Many issues around food are intimately connected with issues of body image, self-esteem, and exercise/movement. While more women than men appear for eating disorder treatment and self-help groups focusing on food, men can be plagued by the same issues.
If you think that you may have a problem with food, know that help is available to you. It's important to get to know what your triggers are, and what healthy coping skills you may need to cultivate. Evidence shows that people in recovery from any sort of addictive process do best with a healthy community of support, whether from friends, family, self-help groups, or professional assistance. Many people find that they need to engage their spiritual life to find meaning and strength in their recovery process; Overeaters Anonymous (OA), a 12-step program based on the AA program, has proved invaluable to many people who couldn't find relief through more traditional methods. OA is open to anyone who has a problem with food, no matter what the nature of the problem, or the body size of the person.
Many of the symptoms of food addiction are common in eating disorders such as bulimia nervosa, anorexia nervosa, and binge eating disorder. Some people's food addiction leads to a need for residential eating disorder treatment, to address the physical as well as the emotional aspects of healing. Others find that they can find significant recovery through outpatient treatment and/or self-help groups. If you feel you have a problem with food, it's important to get an assessment with someone trained in differentiating between these disorders, so they can point you toward proper treatment.
Certain health conditions also can predispose one toward eating certain foods in an addictive fashion; often a combination of treatment with a psychotherapist/counselor and nutritionist or dietician can provide the support needed for recovery.
What do you picture when you think of the term "healthy boundaries"?
If you’re imagining:
* a colleague refusing business calls when on vacation
* a friend breaking up with an abusive partner
* your own careful discernment when sharing personal info in a professional setting
*your mate’s insistence on getting to bed by 10pm
*visiting family for up to 3 days at a time, and no more,
Then, you’re on the right track. Last week, I posted on 5 different life areas in which to consider personal boundaries. Knowing what healthy boundaries are, and knowing how to abide by them for yourself, however, are two very different things. For many with a history of substance abuse, addiction, or repeated compulsive behaviors, boundaries get compromised. This is due to the activity or substance becoming more compelling than healthy self-care and relationships.
For those who grew up in situations where their emotional, mental, or physical boundaries were violated (or at least a bit impinged upon) repeatedly, it can be very difficult to know what healthy boundaries are and how to honor them. Note that boundary violations can be quite subtle.
Here are some key pointers on how to set healthy boundaries:
1. Know what healthy boundaries look like.
One analogy I often use with clients is the image of a strong, upright fence with a working gate that you can open and close at will. It is not a wall (rigid boundaries), or a nonexistent or blown over fence (weak or enmeshed boundaries) that one could just step over easily. It is useful to seek out different sources of information on healthy boundaries, whether it is friends you respect, readings, recovery groups, or your therapist.
2. Identify how it feels to ignore your own boundaries.
Anytime we set intentions for our own behavior (examples include: I will have just one drink; I will go to bed on time so I feel rested in the morning; I will not slap my child; I will not have casual sex) and then don’t abide by it, the results generally are not positive. These types of internal boundary crossings can result in self-aggression or hatred, despair, hopelessness, or anger. It’s important to get to know our exact pattern of consequences when we live outside of our values and intentions, so that it becomes easier to course-correct in the future.
3. Identify how it feels to have your boundaries crossed by someone else.
Most people get a feeling of anger, fear, revulsion, disgust, or general “sliminess” if they have their boundaries crossed. For many people, these feelings above may be the first clue that they have been violated in some way by another person.
By definition, trauma is an extreme form of boundary crossing. Sexual abuse or assaults are traumatizing because one’s physical and emotional boundaries have been so blatantly crossed. Physical and emotional abuse or neglect can also be very damaging boundary crossings. Many people who find themselves abusing substances or engaging in addictive behaviors often have survived significant boundary crossings such as those above. Even if the boundary crossing was not severe or repeated, it can feel quite uncomfortable to have another invade your physical space, attempt to manage or control your feelings, or ask for (or demand) personal information or time you’re not ready to give.
4. Work to recognize your right to set boundaries. For some, the question can arise, “do I even have a right to set a boundary?” Many people fear that setting boundaries in relationship will drive the other person away. And, this fear is warranted—especially if the “other” in the relationship has weak boundaries themselves. However, healthy people will respect boundaries, and chances are, will trust you more for setting them.
5. Identify personal boundaries.
How do you like to be touched, and by whom? How do you like to be spoken to? What are your standards for self-care and your own behavior? What are your values, and how are can you live more closely aligned to them? What sorts of behaviors will you accept from others, and what will you not accept? The more we can get to know how we best operate in our lives and relationships, the more easily we can respect our needs.
6. Practice “acting as if” you honor our boundaries. In some 12-step groups, the saying “Fake it ‘Til you Make it” is popular. Sometimes we need to “act as if” we are willing and able to live in a certain way, until we can believe it for ourselves. Don’t think you can confidently turn down a date or a drink? That’s okay—pretend you’re confident, and try it anyway. You may be surprised at the results.
7. Repeat the above, until healthy boundaries become natural.
Healthy boundaries are flexible, adaptive, and responsive to the situation at hand. With healthy boundaries, we can trust that our “no” means something, which means our “yes” also means something. Others can learn to trust us more fully, as well. And remember: our boundaries in various situations may change as we develop emotionally. This growth is good news!
I’d love to hear what you find about setting your boundaries. Feel free to contact me with your thoughts, or to set up a free initial phone consult.
Teri Dillion, LPC, LAC
New: Ask Teri anything! She'll intermittently select and answer questions about topics related to posts here, or in No Pressure, No Diamonds.