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.
I love rainy days and the gray skies that come with them. It might be my tendency toward melancholy, but I find the sounds and smells of rainy days so relaxing. There are two tasks, however, that become tedious for me in wet weather: keeping my glasses dry and walking on slippery surfaces. And when you combine those issues, I tend to encounter peril. Because of my neuropathy, if I can’t see, I can’t balance. If I’m off balance in slippery conditions, well, you can imagine the rest.
Nonetheless, I like the rain. I just take more precautions to compensate for the known struggles. I walk more slowly. I actually pay attention to where I’m going. And I park as close to building entrances as I can…even if this requires quite a lot of waiting to find a spot. This is all setup for the following story.
I stopped for a coffee while on the way to a doctor’s appointment. This parking lot was madness, one of those that seemed designed by the same people responsible for the Nickelodeon obstacle courses I saw as a kid. When there wasn’t a spot for me, I put up my handicapped (I hate that word but it still seems to be called this) placard and took my place. It might be pride or it might be compassion for others or it might be some of both, but I try only to use this when I need it. Also, I feel the need to exaggerate my limp when getting of the car and don’t like that.
Coffee in hand, I brave the rain for a few steps and get back in the car, immediately taking down the placard as you’re not supposed to drive with it on your mirror. Then I notice a man standing behind my car. He slowly moves around the car and then stands in front, all the while facing me. With a look I perceived as disgust, he started tapping on the “handicapped” sign. I was frozen. I still had the placard in hand, but it took me a moment to sheepishly hold it up. He sees it, holds up his arms in resignation, and mouths, “sure…whatever”. I think this is what he said, but I was still in an embarrassed panic.
I don’t fully know why I felt embarrassed. When an oppressor of any kind shows up, it is hard to stay present. All day, I couldn’t shake the feeling. It wasn’t a huge incident in any way, but it was a familiar one.
Then my thoughts shifted. I began to wonder what experiences had shaped this guy. While I don’t like his stance of automatic judgment, he likely thought he was standing up for someone or some group. Perhaps he has a disabled loved one. Maybe he has known the stress of trying to navigate the rain with someone in need and being worried about the lack of safety with each potentially-slippery step.
Then, another shift happened. How many times had I made assumptions that contributed to a marginalized person feeling even more marginalized? Do I communicate judgment in my face or with my words? How often am I the one tapping the sign?
I’m not excusing this guy’s actions. However, curiosity about his motives and about my own similar actions reframed the experience for me. Embarrassment faded and empowerment entered. Because if I can take steps to seeing, I can usually find my balance again.
Do you hear what I hear? The sounds of chaos, complaining, and capitalism. Mostly the complaining is coming from me, to be fair. I really do love Christmas, but some parts of everyday life seem harder during this season. There are more plans, but less time. More to get, but less money. And so on. I get tired.
This year, I was ready to heartily endorse a no frills Christmas, skipping the décor and all of it. It is so much hassle. Then my daughter, my sweet daughter, told me how she has looked forward all year to using the tree decorations she picked out in last year’s post-Christmas sale. And my heart melted. Heather and I assisted her in getting the tree up and she created a beautiful product in no time.
And my creative and sensitive son helped me do some shopping. He recalled such specific aspects of loved ones that the shopping felt fun and inspired. We breezed through it.
Then my brilliant wife set up a gift wrapping system that had each item wrapped, under the tree or even shipped with no delay. So now I sit here, 12 days before Christmas, with no hassle left. I’m looking at a decorated tree with wrapped gifts under it and I’m full of gratitude.
I’m not grateful for the stuff, but for the reminder that relationships have the ability to help heal stress (and not just cause it). And, when I notice that, celebration is an overflow, not something I have to muster. I’m not trying to talk myself out of the hard because this season can be hard for me and many others. I just want to be capable of noticing the good, too. In this moment, I revel in the merry and agree that it is a wonderful life.
I am fascinated by how our brains process sensory stimuli, how that stimuli is associated with memories, and how we make meaning of it all. It is complex and beautiful and well beyond my understanding. Still, I ponder.
Of all the senses, I think we frequently get triggered, in positive and negative ways, by smell. Sometimes, certain scents assault me. I momentarily feel as if they actually want me dead. I also feel this way when the temperature drops below 40 degrees. Our beliefs about which smells should be called “bad” are so subjective, though. I strongly dislike the smell of leather, which many people seem to enjoy. These people are obviously wrong, but I struggle to quantify any proof.
I love, love the smell of coffee. It makes me feel warm and almost extroverted. Only almost. I associate it with happy memories from growing up, which definitely reinforces why I choose to call this a “good” smell. The strongest safe place image I can actually conjure comes from a real memory where coffee is a central character. Even as I type this, I can remember the smell and feel immediately content.
Coffee has always been most of the olfactory component of this memory, but there is this mysterious other unknown smell grouped in there. Well, unknown until recently. I was making coffee and perhaps passed an indelicate wind through the depths of my very dysfunctional digestive system. I was repulsed by myself, but then experienced the intermingling of the smells. And I placed the mystery smell of my safe place memory. Yes, coffee plus fart equals my most secure smell.
I was devastated for a minute because this is disgusting. However, then I realized I didn’t have to give way to judgment. For years, I had assigned a wonderful and comforting meaning to this smelly memory and then, in one second, I had allowed that security to be shattered. Because of an association that I don’t even know to be accurate. How often do I allow these passing experiences of self-judgment compromise what could remain powerful internal resources? And, if I don’t notice these judgments, how can I reclaim the experiences?
This time, I did notice. And I choose to focus on the coffee. This brings me joy and I need joy and I deserve joy. And so do you. What’s your coffee smell? And let’s stop judging the farts of our lives so easily.
A few weekends ago, I broke a tooth. While totally inconsequential to this story, for the life of me, I can’t remember how I broke it. This detail does fit into a larger theme that I will explore when I’m like 95% emotionally stable (so never). Anyway, I broke a tooth. I called the after-hours dentist people who said the office would work me in Monday morning before the regular hours. By the way, Monday was Halloween.
So I wander somewhat anxiously into the dentist office because I get weirded out when they put their hands in my mouth. By now, you should all really understand the depth of quirky I possess. I immediately discover the entire dental staff are all in full costume. Next item in the quirky inventory….I don’t costumes….seriously don’t enjoy the internal distress I experience when not knowing what humans with their many revealing nonverbals are actually underneath the masks and such.
As my awkward skyrockets, the kittycat leads me back to the “chair”. On our way, we actually pass this massively tall figure dressed as death. He is roaming the halls with his “devil stick”, as my wife calls it. And I knew, I mean I felt deeply with conviction, death was my dentist. I take my place in the chair of vulnerability and wait for death. And, of course, he comes. Dr. Death introduces himself. I’m sure he was actually pleasant and kind, but I don’t remember what he said because I’m freaking out about his death eyes. He had a mask, see above for my feelings about masks, that was somehow paper mached to his face and had two dark little eye holes drilled in. I was melting down into a complete dissociative state when something truly awesome occurred.
You see, I think I was Dr. Death’s first patient of the day and, as such, he had not yet tried to sit on his little dentist stool in his long death dress. He is hiking up his dress and trying to position his eye holes for a safe landing and I cracked a smile that dental assistant kittycat saw. She winked and smiled and all the scary disappeared in a moment.
If we are all honest, we are all scared about something. Most adult humans are probably more existential and/or pragmatic in their fears while I choose to fixate on mouth touching and creepy masks. Nonetheless, we all got fears. And we all wear masks. I think our masks are likely quite related to our fears. We want to believe we can control what we project and so our beautifully-protective brains develop a sequence of metaphorical masks that we wear when certain situations arise. Sometimes, we wear the masks for so long that we no longer remember they are masks, but then small moments happen…moments when someone shows up who sees what we see and creates safety in shared emotion like the kittycat did with me. Truthfully, I am beyond blessed with people in my life who are capable of creating safety with me and I hope to do the same for others. For it to fully permeate, though, we have to let down our masks.
Reflections on lessons learned from being a therapist and adoptive dad.