My daydreams, for years, indulged the fantasy of being granted the super power of invisibility.
That power [invisibility] would bring me safety, control, protection, rest. All in one moment, struggles would be obsolete.
One day, recently, a passing internal question changed the dream. Why is invisibility the solution for insecurity? Beliefs began to unravel and reassemble.
If I get to wish for a supernatural skill set, then I choose to be seen…actually seen….20/20 sightedness that shines light on who I am and how I came to be. Then I, in return, have the power to see the inner workings of those taking in the experience of me. I see their acknowledgement and acceptance or utter lack thereof.
I could continue to wish for retreating into invisibility, but I am then complicit in wishing for others’ blindness. Or I can stand here and insist on seeing and being seen, ending the longstanding game of relational hide and seek.
Ready or not…
I am feeling unbelievably blessed these days. I am living with the three coolest people on the planet, who happen to be my family. Work is pleasant and fulfilling. I’m able to travel to beautiful places to teach beautiful souls (who are really teaching me). Life is good, but I still feel afraid.
It’s not the kind of fear that is easily identifiable by others. I’m not experiencing panic (at least not in this particular season). I’m not even as obsessive as I’m capable of. Fear is sneaky, though, and it’s in there.
Every aspect of my body and being needs work. My default mode is to an extremely mild dissociative-like (totally fear-informed) state, often intentionally induced by Netflix and apathy. Fear is doing its job, but it’s also preventing me from true growth and awareness. I just read a piece from Richard Rohr where he said that “fear is not enlightenment”. I endorse that wholeheartedly. The problem is that my fear believes it is enlightened.
I’ve been teaching on fear quite a bit lately. I teach that fear is, by design, a protective emotion. It shows up when life has taught us that it is useful. A good and counterintuitive introductory plan to addressing fear is to see it, acknowledge it, and be grateful for it. Being thankful for fear’s protective nature better prepares me for noticing whether protection is actually needed, and, for noticing what other kinds of strength-based protectors I have access to.
I’m trying to practice what I teach. So, I say to you [fear], I often fight you and judge you and even indulge you. Today I only want to listen and learn from you. As I come to understand your message, I will express my gratitude for your protective nature. With the awareness that could come from holding together both you [fear] and gratitude, I will look for safe people and protectors who can support the work you’ve been doing on your own for so long. I want to give you rest, not overpower you.
And now I breathe.
I love reading about mindfulness, probably more than I love practicing mindfulness. Even though mindfulness is intended to emphasize noticing without judgment, I often just judge my lack of noticing. Or even judge what I’m noticing. This is not mindfulness. So, I decided to spend today noticing all I could and intentionally attempting to enjoy mindfulness inspired by even awkward encounters. Here we go…
8:30 am – In a moment of indecisive driving, I ended up horizontal in some vertically-oriented traffic. This brought some impassioned gestures my way. Traffic wasn’t moving so I had a good 45 seconds of eye contact with two of these drivers (who did not seem to be practicing mindfulness). I noticed their faces, their hands (and fingers), and their horns. I am pretty sure they had come to some judgments about me. I waved and mouthed some words explaining my day’s goal of embracing uncomfortable moments. I’m not sure if I won them over, but one did seem interested.
11:15 am - When in a professional meeting with a lovely human, we got to a moment where a difficult and unfair conversation was being vulnerably shared. I, in response, compared the situation to a certain kind of fart. As I was saying the words, regret almost an appearance. However, I notice her reaction (over my own embarrassment) and now see that she is laughing. I then start to laugh. Metaphors (even digestive ones) just work.
2 pm – I’m in a hurry, but I needed to pick up my glasses. When running into the office, I quickly opened the bathroom door outside the eye doctor so that I can get rid of my gum. Aiming at the trash can, I missed by quite a lot. The gum sticks to the floor between the toilet and the wall. I freak out a bit. While trying to solve the problem creatively, someone walks in (because there had been no need to lock the door as spitting out gum takes an average adult 3 seconds). So I explain to the startled man that I had a gum incident that I needed to rectify, but it’s ok because I’m practicing mindfulness. He decided he didn’t need to use the bathroom. I understand his instinct and move forward with my plan.
It’s nice to try and catch moments of mindfulness in sweet or tender or heartfelt situations. However, mindfulness allows for any moment to be treated as important. My awkwardness has something to offer me. Today, I feel entertained by parts of me that usually lead to mild self-loathing. Some of self-acceptance led to immediate relational payoff. Some did not. Still, I notice.
I almost got murdered today. Or maybe I imagined it. Who can tell anymore?
My sweet dog has been a little off lately. It could be that she’s sad since my daughter left for college or it could be that vengeful ghosts have taken up residence in my bathroom. Again, who can tell?
So, after a busy and scattered morning, I come home in the middle of the day for a quick lunch. My dog, unusually, did not greet me. I found her growling at my closed bathroom door. So, since I am a 40-year-old father of two, I did what is mature and brave. I called my dad…who lives 4+ hours away.
I think I was convinced that being on the phone while confronting a murderer would leave a trail for the homicide detectives. And bring me comfort in my dying moments. However, in reality, my dad said, “wow…that’s two of these calls today.” Paranoia confirmed.
I opened all the doors and gathered objective data that no one was actually in my house. I swear my dog was smirking at this point. Still unsettled, I abandoned my dog to the not-yet-materialized murderer and went to my favorite coffee shop. I walk in to see the smiling faces of the coffee geniuses who have become part of my community. As I approach the register, one says, “Hey…you’re the subject of a mystery around here. Any idea why your name and number are on our employee bulletin board?” Yes. Because all of the murderers are looking for me. And they’re getting sloppy.
I’m sure there are logical explanations for both of these events. However, it can seem on days such as today that all things everywhere are collaborating to maintain my neuroses. I know it’s all about state-of-mind. When in a calm, mindful place, these events would add up to a completely different set of meanings. Today, though, I allowed for a mounting overreaction and my cortisol is just now leaving the recesses of my nervous system. The world is not out to get me. I am just a little stressed. Perspective gained. Imaginary murderers defeated.
Lately, I’m hungry all the time. And it makes me mad. What makes me less mad? Eating. You see my dilemma?
If you are now expecting playfully-constructed attempts at introducing health and wisdom into this topic, go somewhere else. I’m not in the mood today.
I know myself well enough to understand this is a nonproductive coping mechanism so I need to get in touch with the underneath struggle and cope without self-destruction. Blah, blah, blah. I could also get some tamales and deal with my junk tomorrow.
Self-awareness needs a pause button some times. I will come back to it. I will not undo all progress with one day of known crazy. And it helped to write that down.
I get that not all problem behaviors can be ignored even for a day and not all people have the luxury of delayed health seeking. However, there are moments [for me] where it’s ok to notice the pattern without feeling the stupid pressure to defeat all related demons.
So, tamales today and reflection tomorrow.
I have a guest-written blog article today and I’m excited for you to read it. I met a pair of interesting guys while traveling in San Francisco, working on something called Campfire. Daniel and Benjamin are two tech-types who are attacking a problem that we can all appreciate, albeit in our own way. We sat in a coffee shop in a part of SF that I was definitely not cool enough to be in and had an amazing chat about community and innovation. Here you go:
The problem we're trying to address with Campfire is not only big, but a hard one to get your arms around. About 1 in 5 folks struggle with their mental health in a given year. And mental illness is the biggest area we spend money on in our health system. Yet it feels like most people who could use help don’t get it.
But that’s just one side of the coin. How many of us have a personal problem that weighs on us, but might not fall into the category of mental health? The grief of losing a loved one? The anguish of feeling fundamentally different from others? The frustration of dealing with a physical challenge that others can’t get? This group most likely dwarfs the first. We wouldn’t be surprised if it included you.
Often the worst part of dealing with such a challenge is feeling lonely in fighting it. Loneliness is a big deal, since we are inherently social creatures. More evidence is showing that loneliness is unhealthy not only psychologically, but also in a biological sense. It might be as big a health risk as smoking or heart disease. So many of us are lonely today in general, but especially in fighting our own personal battles. Really it doesn’t need to be that way, since there are tons of people going through whatever bothers you right now.
We think that we can use technology to help, having been inspired by old school support groups and the “sharing economy” theme (Daniel was with Airbnb from early on).
Campfire’s mission is to make it easy for any of us to tap into a support group of people who are dealing with the same challenge we are. You get to know your group of say 5-10 people during video chat sessions weekly. But you also have a private chat group where you can connect at any time, to reach out for help when it’s needed, or just to enjoy relating with people who get your deepest parts.
There’s a host to facilitate the experience, but really it’s about letting the members help each other out. Part is catharsis - the great feeling of bearing your soul to real people who care (folks often cite this as a prime benefit of therapy). Part is getting emotional support from those going through the same journey. And some people like hearing the advice and experiences of their peers.
First we spent weeks of research visiting support groups and talking with people to understand their needs. Then, we tested out the service in a pilot. The results so far have been really encouraging. The video call experience seems to be working much better than one might expect, and some people actually told us they preferred video to meeting in person! But more importantly, people were brave enough to share their challenges, and felt connected to the others, often even in the first meeting.
Some touching experiences emerged from the groups. For example, one member was dealing with the recent and sudden death of her spouse. Living in a section of the country out of reach of most services and community, she really appreciated being able to get help from the comfort of her couch, and within sight of her child.
Campfire teamed up with a nonprofit, ANAD, for its eating disorder groups. ANAD liked it so much they think that such virtual groups are the future. Laura, ANAD's Executive Director, has seen many peer support groups during her tenure at ANAD, and she was especially excited to see that the online Campfire groups are the most truly diverse set of people she's ever witnessed. She thinks that they could not only reach more people than before, but also that the benefit could be even stronger when we can connect to those who might have superficial differences from us, but are the same where it counts.
So it looks like a good start. I wish Daniel and Benjamin well and thought it would be nice to spread the word by telling some of their story here. If this speaks to you, I’d encourage you to sign up on their website, since they’re getting the next round of groups ready. It can feel like a dark cold world out there and this approach certainly can’t solve our problems, but it gives a warm feeling to know that we don’t have to be lonely in dealing with them. If you’re interested to get in touch with the team directly you can email them at firstname.lastname@example.org.
I can spin out over completely unimportant details, especially when life feels too big or too fast or too much out of my control. This morning I sat down at my desk and noticed the colored paperclips had spilled into one another’s clearly-defined areas. So, naturally, I spent 20 minutes putting them back where they belonged.
I don’t think there’s anything wrong with order. I’m a fan. However, sometimes, I focus on order at the expense of learning from disorder. Both have something to teach me. I need to learn when is the season for pausing to reorganize and when is the season for moving through the immediate mess to get to something else.
This weekend has been a little stressful. There are professional and personal things that are outside of my perceived control….constant decisions to make without all the data that I wish I had. Maybe it’s ok to take a minute to fixate on paperclips. Or maybe it’s me avoiding the chance to meditate on tolerating ambiguity.
So I moved one paperclip back to where it seemed to want to be. That’s where I’m starting.
I jumped out of a plane last week. On purpose. For so long, I’ve been accidentally falling off stuff that I was curious about what intentionality would feel like. It’s better.
People have been asking great questions about the experience. The most common one has been, “When did it get scary?” Honestly, I was pretty freaked when the giant instructor man was stuffing my body into the very green jumping-out-of-a-plane suit. It was clearly not meant for my body type. I looked like Kermit and Miss Piggy’s love child.
If the suit wasn’t meant for someone who looked like me, one must wonder, quite logically, if the activity was meant for someone who looked like me. Then, I got a little mad. I’ve been self-limiting for way too long. Because of how I look. Because of how my body is surgically held together by duct tape. But, mainly, because of the messages I’ve received from the world about how I look and how my body is damaged from illness and surgery.
It is so easy to fall into agreement with the judgments of others. I’m beyond lucky to have countless family and friends who love me and believe in me. Still, it seems easier to believe the voices from my distant past. Every once in a while, to bring power to my voice and credibility to the voices of those who love me, I have to risk something. Rejection. Failure. Plummeting to my death.
So I’m in a season of trying to live without self-imposed limits. I still feel afraid of a lot of things (and even more people). However, if everything feels risky, it’s possible that my gauge is malfunctioning. And, while I continue to work on repairing that gauge, I am going to have to take some blind leaps.
My wife and I were so fortunate to get to travel to Barcelona recently. This was the fulfillment of a lifelong dream and the week felt magical. Surrounded by so much beauty (and ridiculous food), it seemed like a bubble was created where reality was temporarily suspended….with one exception.
It was hot, so very hot. I do tend to like the heat because my neuromuscularly-challenged body relaxes, but this means I wear shorts and my clunky leg braces are on full display. As we walked down the streets of Barcelona, especially in the less touristy places, I felt the stares. I began to get self-conscious and this momentarily pulled me out of being present and grateful.
Here is a big “however”. HOWEVER, the people and the city of Barcelona were amazingly accommodating. The city had ramps, handrails, easy public transportation, patient pedestrians and benches everywhere. Plus, when I would enter a train or bus or whatever, locals immediately gave up seats for me. They even did so with overt grace and joy. What started as an awkward feeling transformed into feeling honored by these generous gestures.
Then I noticed a rewinding of my too quickly formed beliefs. Initially, I was uncomfortable with the not-so-casual glances directed toward my braces. I believed they were looks of judgment or pity. Yet, it was their seeing the manifestation of my struggle that made available the opportunities for my needs to be warmly met. I’m not accustomed to this, thus my lifelong journey to not see vulnerability as a poison waiting for the chance to kill me. So I began to believe that the good people with whom we were interacting were curious about how to help, not how to judge. I began to believe that I was privileged to be seen.
When this shift happened, other changes came quickly. I was more spontaneously interpersonal. I learned many people were admiring my cane and not just looking at my braces. I felt more connected to the city, the people, my wife and myself. I became more adventurous. I felt relaxed (to be fair, sangria and a total lack of responsibilities could have contributed to this one).
It was so great to get home and see my kids (and my dog), but it was hard to come home to the place where my original beliefs about disability equaling inadequacy were formed. The airport alone sent me to a fetal position. I do love my country and I don’t pretend to know the culture of Spain after one week in one city. I’m just saying that we (myself included) can make it emotionally and logistically hard on people who have all kinds of disabilities. When that part of me is seen here, I feel the instinct to cover it up. I feel pressured to prove my competence and embarrassed to ask for accommodation. I know a lot of this is my personal struggle, but I want to also boldly state that the current climate of our country is strongly contributing to the dynamic.
I would assume that anyone who reads this is personally connected to someone with some type of disability. With compassion and good timing, ask them about their experiences. Let it provoke you to a place of informed advocacy. Silence speaks agreement most of the time. As a person with a disability, I have been too silent on this topic and I’m imagining many of you have also been quiet for a number of reasons. So let’s talk. We can do it over tapas.
The following is a much-abbreviated list of places where I’ve fallen down: Walgreens, airport jetway, university sidewalk, university staircase (outdoors), university staircase (indoors), a park, an amusement park, a parking lot, a museum, Mexico (amazing story), and countless other locales. If you’ve read any of my previous posts, you know I have a disability that comes from a neuromuscular illness. So when I fall, I do a phenomenal job. It’s dramatic and artistic and memorable. A real thing of beauty.
It’s not the actual falling down that creates the most awkward part of these scenes; it’s the getting up. I actually practice getting up off the ground at home. I have to plant my hands far apart from one another for balance and leverage. My legs lock and I throw my rear in the air before then regaining upright positioning. If you have seen a toddler spin around until dizzy, fall over and then begin again, that’s me.
I can even fall from a sitting position. It baffles even me. My sweet dog, Angel, is being taught to help me up when I fall, but we sometimes have moments of confusion as we are ironing out the kinks. One recent morning, I woke up and thought I had just enough time for a quick Angel walk before getting the kids to school. We had a good walk, lovely morning. I stopped two houses away from mine on the return trip to sit on a small retaining wall and pet Angel. I was just sitting there and then it happened. In a moment of distraction, I got startled by an Angel kiss and fell right off that wall. Angel, either thinking this is a fun game or wanting to practice her new pick-me-up skills, came over the wall with me.
Here’s where it gets dramatic and artistic and memorable. My shorts stuck to the wall as I descended. So I’ve fallen off this wall…while sitting…have a 100-pound dog on top of me…and I’m pantsless. My ankles are up on the wall with more shorts. I’m a little mortified. Angel is not all shaken. She is responsive, checking on me and getting into her supportive position. Then, she just moves on from the moment, playfully engaging the world again. I start to laugh, attempt my toddler-style re-centering, and get home as fast as possible.
I’m at peace with most of the clichés about falling down….be it about the nature in which one falls or how one gets up. Sure. I’m not mad at those. For me, though, I have been working through what meaning I assign to the falls. Inevitably, the meaning is a mash-up of what I think other people think and what I actually believe about myself in those moments. When I sense another’s embarrassment, I feel embarrassed. Or it goes the other way. Someone senses my embarrassment and they catch it. Introduce one person in that equation, or dog, who replaces embarrassment with acceptance and the entire meaning of the fall changes. It might change to a moment of levity or grief. Either of those can be relationally connecting, but whatever meaning brings embarrassment seems to encourage relational distance.
So, I fall down. It happens. If you’re with me, feel free to check on me, offer support, but be ready to move on. These are opportunities for us to strengthen our connection, which is ironic since they are born out of my inherent physical weakness. My falls are part of how I’ve become who I am. So are yours. And the next time you see me, ask me about Mexico.