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.
Today is surgery eve…I decided to name the occasion as part of my day-long experiment on managing the internal chaos that accompanies each and every surgery. Today, I am also getting a haircut because I like the smell of the barbershop (for the soothing), eating lunch at my favorite spot (for the indulgence), and obsessively cleaning (for the control). This is the formula for my own personal self-care cocktail.
I don’t get nervous about the actual operation. I can’t even remember if I ever was anxious about hospitals and doctors and surgeries. For one surgery, the techs accidentally interpreted my calm for sedation, causing me to hear and witness more details than a patient wants to while lying on an OR table. I remember they were enthusiastically singing “I’m Too Sexy”…I really want to believe the OR is filled with classical music or Dalai Lama quotes read aloud or something. Right Said Fred should never be the last noise heard before being overcome by anesthesia.
I imagine I was anxiously impacted by medical stuff at some point in life, but that’s distant. Don’t get me wrong…I don’t like all that comes with living in a struggling body, but I think my brain now understands that the hospital piece is the easiest part for me.
What I hate is the recovery. I don’t like being dependent and needy and limited and weak. In short, I don’t like my humanity. This gets in the way of progress in many parts of my life. Somehow I made the mistaken connection early on that being capable means being distant, aloof, and independent at all cost. Not only is this completely fallacious, but I’m now working on rewiring my mind to see that strength actually comes from the ability to share burdens. I share my burdens with you and you with me. Then, like breadsticks at Olive Garden, there is a never-ending supply of nourishment from which to draw strength. Now, I’m off to practice living that out…
“We’re a long way from the farm…” is a phrase uttered many times between Dr. Mentor and me on recent trips. Although we grew up many states and some years apart from one another, we share a common rural upbringing that was far from exotic. I didn’t even know how to imagine things I’ve experienced on my last few trips. I’m grateful and humbled.
Our most recent trip was back to Lebanon and Jordan. I love these countries. The people. The beauty. The history. The FOOD. And when you teach, it feels like a rich conversation. I feel more like an extrovert that at any other time, but it is really just people relationally honoring my introversion so that I feel socially safe.
On a day-off excursion in Jordan, we were treated to a luxury camping experience in the middle of breathtakingly beautiful desert. Camels roaming about and more stars in the sky than I’ve ever seen, Dr. Mentor and I just sat in the quiet presence of our lovely hosts. My curiosity was skyrocketing as I imagined what ancient feet passed through this same patch of land and what thoughts had been wondered by the minds connected to those feet.
Then I rode a horse. Into Petra. I don’t ride horses. I believe horses are beautiful and to be feared….like the ocean and Helena Bonham Carter. However, the opportunity to experience a wonder of the world on horseback was temporarily bigger than the fear. My horse guide, Mohammed, led me into the ancient city while excitedly asking me about how many cowboy hats exist in Texas. I became relaxed and then even connected to the horse. I asked what the horse was called only to have Mohammed say there was nothing. So, now that I’ve been through the desert on a horse with no name, I feel strangely settled.
Even with all the exotic beauty and unusual adventures, the people I’ve met are the source of joy on these trips. I’ve begun friendships that already feel lifelong. They are caring and committed to building community rooted in love. They are authentic and full of life. If I’m honest, the fear of horses was a playful distraction compared to other fears that almost prevented me from ever traveling to the region. However, as I have so quickly experienced the receiving and giving of sincere compassion from my new friends, I more understand the paradoxical reality of how fear displaces love. Thanks friends. See you soon.
I have a disturbing number of bathroom stories. They humble me in the moment and entertain me later…sometimes it’s a while later. This post is dedicated to bathroom stories so do not read further if you’re unprepared for disturbing potty-related mishaps. If you make it to the end, there will be a lesson learned. It just arrives after an indelicate journey.
I have found that the automatic flush feature in airport bathrooms is either incredibly hypervigilant (rushing me off with continual Niagara-like flushes) or not at all functional (where I am frantically waving at the sensor like Annie Sullivan trying to communicate with Helen Keller for the first time). Then, once I arrive at the sink for hand washing, there is extreme inner conflict as I realize anything I touch in an attempt to wash the experience away will actually only make me more contaminated. Recently, I had a particularly disturbing experience with some guys sponge bathing in the sinks and I couldn’t make peace with any plan that involved handwashing. I engage in prepared self-talk, reassuring myself that I had hand sanitizer in my backpack and I would survive this. Seated at the gate, I begin the process of trying to extricate my hand sanitizer from the seven levels of zippers in my bag. Next I’m trying to go back and sanitize anything I have touched while trying to access the sanitizer. Oh the futility.
Then, last week, the family and I went a couple hours south of our hometown so I could have a meeting. While navigating the various traffic hazards, we decided to dismount the interstate for a gas station bathroom and candy break. This is a travel stop sort of place and there is quite a line in the men’s room. As I walk in to the bathroom, a man with some fascinating face tattoos (who seems to have proclaimed himself as mayor of the travel stop) directed me to choose between the “line for number ones” and “the line for number twos”. I fall in line behind him because I always try to align myself with those in power. He immediately takes me under his wing and advises me not to enter any stall that is exited by a guy with a backpack. Because I’m me, I need more information. In 25 seconds or so, he succinctly describes drug mules and the role of the cartel in the upcoming presidential election. While I’m trying to process the possibility that I was being initiated into a gang or cult, a man exited a stall with a backpack overflowing with plastic bags. Mayor Face Tattoo raises his eyebrows and waves the third in line into the now available stall and I decide I can hold it.
Perhaps the most traumatic of all my bathroom experiences happened in the middle of the night at a Walgreens. It is possible I am about to admit to breaking any of a number of city ordinances. In order to digest this story, you need to know that when I get sick, I get SICK. There is no off switch. When the fluid starts to exit involuntarily, I have to get to an ER. So, several years ago, I get sick in the night and my wife can’t take me to the hospital due to having little ones at home. It is a relatively short list of friendships that I think can survive taking me to the ER in the nighttime for this particular ailment. Enter friend V. V has witnessed some of our catastrophic and historic family moments, but none would compare to this night. V comes quickly and begins the seemingly never-ending drive to the hospital. While unsuccessfully trying to override every biological impulse in my virus-infested body, I unleash a fury in V’s car that simply can’t be captured in text. I ask for her to pull in somewhere, anywhere. Enter Walgreens. I urgently and gingerly walk through the empty aisles in search of the bathroom, evidently gathering suspicion in my plight. As I assess the situation in the bathroom stall, I realize there is no option other than search the store for replacement clothes. I find some sort of moderately offensive t-shirt easily, but there are no pants. I’m panicking. Anything will do. I’m not picky…please let there be pants. Any pants. And then I found them….one pair of way too small WHITE sweat pants. Honestly. I get the white sweat pants and make the purchase while avoiding any eye contact. This, in retrospect, is just adding to my suspicious behavior. I rush back to the bathroom, which has no lock, and start to clean myself in the sink when the manager comes in to discover what illegal activity is going down in his store. Unclothed and unspeakably disgusting, I feverishly tell my story and, let me tell you, this guy couldn’t get out of there fast enough. I put on the t-shirt and terrifyingly white pants and, with relentless apologies to V knowing she can never un-see this, resume my trip to the ER. By the way, that did not make the Carfax for whatever poor soul next got that car.
Let me tell you something about frame of reference. When I consider myself as the one to be contaminated by others, as in the airport bathroom, there is a part of me that looks upon others with disgust. When I see myself as the straight-laced law abider, I judge the life choices of others, as in the travel stop. However, when I see that I am the actual broken, filthy, break-any-norm-to-survive-the-moment person, I soften. I remember that every life choice is preceded by a story and that context gives capacity for seeing situations through a filter of grace. I shouldn’t need humiliation to remind me of this, but it sometimes takes that. Remember that in your future bathroom moments.
I grew up with six grandmothers, my two grandmothers and all four great-grandmothers. Plus, they all lived relatively close so I spent a lot of time with each of them. Until recently, I didn’t know how unusual this was. Most people have to stop and think when I insist that everyone has actually four biological great-grandmothers.
I lost my great-grandmothers in my late teens and twenties. There was Little Momma, Big Momma, Grandma, and Oochie. One taught me how to do word games and persevere no matter what. One showed me survival. One modeled work ethic, strength, and how never to spend money unnecessarily. One exuded compassion and grace and had the best giggle. They all taught me resilience.
I am blessed with the surpassingly wonderful pleasure of still having both of my grandmothers. They are incredible women. Full of life. Devoted to family. Ma Billye lives in the same house now that she lived in for my entire childhood. Even though she is five foot nothing and probably no more than a hundred pounds, I always felt safe with her. She worked in an office, which was unusual in the rural setting of my youth, and I thought that was amazing. Plus she kept candy bars in the freezer. There is nothing better than a frozen Snickers.
Ma Nellie, my maternal grandmother, is hysterical. She is full of kindness and gratitude, but also never minces words. An amazing cook, she owned a small country store and café when I was little and I rode the bus there after school. I miss that food and, even though it now would cause me and others unthinkable discomfort, I would crawl back to that store for the gravy.
A couple of weeks ago, I spent some days with Ma Nellie in Las Vegas. Together, we assertively dealt with slot machine lurkers, narrowly avoided ambiguously-named strip clubs, shared sidewalk vendor Lebanese food, spontaneously joined a screening audience for an upcoming sitcom, fought off capitalistic super heroes, laughed at confusingly-provocative slot machines and talked and talked. It was just an awesome privilege.
All of my grandmothers are novel worthy characters. Their strength is undeniable. Gratitude doesn’t feel like a strong enough word to describe my appreciation for all they have provided to me and so many others. My personal goal is not to waste any pain that comes my way while also not being defined by my pain. I was given a generous head start on this goal thanks to the sacrifice, drive, and love of my grandmothers.
Reflections on lessons learned from being a therapist and adoptive dad.