On Celebrating My Body

Four years ago this month, I chose to take my body back, putting my energy toward healing rather than hurting and destroying. Recovering from an eating disorder is not black and white, and there is as much of a mental component as there is a physical component. The beginning of the pandemic rocked me mentally, and I found myself teetering on the edge of unhealthy habits in order to cope with the stress of the unknown. Anxiety left me with little to no desire to eat, and when I did I was concerned about my ability to keep it down.

There are times where this kind of journey, this process, this life, has felt like basic survival. Going through the motions. Taking steps and following plans in order to go forward instead of fall backward. And yes, there are seasons, like at the very beginning or after a relapse where that’s the best course of action. But at what point does one shift their focus from surviving and actually start living? Or living again? 

Celebration is vital, and it’s something that’s not talked about enough in support groups and communities. We can talk about body positivity, neutrality, love and acceptance all across the board, but it becomes an echo chamber if we can’t identify and therefore practice what it looks like. And we deserve to. 

Especially now. 

Take All The Pictures (And Pose)

The very invention of the photograph was to create and keep memories, and for a long time you had to appreciate it, regardless of how it developed. Even before social media, I loved picking up a camera and capturing the beauty around me, even at the risk of annoying everyone else. Photography has become a favorite hobby, and I’m not going to deny that I love doing photoshoots (and having mine taken). I haven’t spoken about it much due to the fear of frequent discouragement, but I have been curious about modeling, regardless if it involves money or not. I’m fascinated by the creativity, the set up, and the way everything comes together. 

I want to remember the days, the moments where I feel good; good, confident, and completely and unabashedly myself. As scary as it is to see my body change, it’s even scarier to think about where I’d be or what I’d have to go through if it didn’t. It’s a sense of maturation, a softening, even if it’s not conscious. Your body is allowed to evolve with your mind, and it’s part of why I wear less eyeliner, only use hot tools on my hair when truly needed, and am most comfortable when wearing less clothing. 

I try things, but I don’t share it all with the world, because not everyone deserves to see it. I have a right to pleasure and enjoyment, but I’m rather selective about who I allow into that part of my life. It already feels vulnerable enough, and if I’m going to make it public, there has to be a purpose. I reject shame, and making anyone else feel that way merely because we’ve had different experiences.

Cultivate a sense of Adventure

I adore exploration; There’s something romantic about getting on a train or a plane and wondering what the day holds, who I might meet, and how it would change my life for the better. The recovery time might take longer, and I have to priortize rest and relaxation in the same way I do having a social life. All I can say for sure at the moment is figuring out how to do both is ongoing.

My family and I had to delay a vacation due to the pandemic, and then ended up making it happen almost a year later. It took a lot of balance with making lists and doing research, while still trying to roll with whatever was out of my hands (especially in terms of weather). I’m still a work in progress in regards to asking for what I want, and claiming victory in speaking up and putting something out there. This is especially true for me in relationships, both personally and professionally. 

It’s the kind of curiosity, vision, and creativity that has carried me through a lot of hills and valleys in life, even more so in this last year. 

Move. Dance. And Don’t Worry So Much 

Movement is a gift, and one that I often take for granted. I love to dance, regardless of speed, and despite never having concentrated on one specific type. At times I’m hyper-aware of the way others might watch me, which is why I’ve never been keen on taking classes (due to the impulse of self-comparison and criticism, wondering why I feel like I could but can’t seem to do it like those around me). But when I’m with people, when the lights go down low and the music is loud, I give myself full permission to go all out.. Sometimes I’ll start in on it without fully realizing what’s happening. Sometimes I’m in church, and sometimes I’m on a sticky dance floor surrounded by old-school paneled walls holding memories that could span decades. 

I’m going to a wedding in a couple of weeks, and I haven’t been part of a crazy party since my birthday back in 2019. I’d like to think I’d kick my shoes off and completely let go, or maybe ease back into it, depending on what the vibe is. But I will be in my element, and I will try not to overthink anything. 

Sip and Savor

My relationship with food has been complex as far back as infancy, texture sensitivities and subconsciously absorbing elements of diet culture playing key roles. I know that I enjoy grazing/snacking more than taking in fuller portions, and the latter can be overwhelming to the point where it causes anxiety. I’d like to expand my palate more (I take pride in trying mushroom stuffed pasta recently), but it’s all in the baby steps. I don’t label any food as good or bad, and do my best to listen to what my body wants and when it wants it. Rather than restriction, I focus on variety, even though there are days where all I can do is get something in my stomach, even if it isn’t particularly nutritious. 

I want to be fully able to see food as an experience, rather than something to rush through or survive on. I love the meditative aspect of cooking, and the sentimentality of drinking coffee in the morning and wine or tea in the evening. It’s those parts of my day that force me to go slow, to look around me and pay attention. And if you’ve ever heard me make a raunchy reference to eating chocolate (mousse, gelato, etc) maybe after reading this you’ll understand why. It should be pleasurable, and damn it if it can’t be sensual every so often. 

And when I can’t rejoice in my skin, or the things that come with it, I simply try to show it compassion. Here we are, calloused fingers and toes. Thank you, slightly pudgy tummy that sticks out because of poor posture. It all moves and functions differently, but I adapt and I figure it out. 

Yes, I have thin privilege. Yet I also live in a handicapped/disabled body, which society at large does not celebrate (if that was the case, ableism wouldn’t exist). It feels like a paradox, looking one way but having multiple layers to contend and come to terms with. And that is a whole story for another time. 

Right now, I thank God for four years, and for the way he physically made me. Even where there are days where I struggle and question and want to just get it right already. 

Here’s to draping myself in grace, and grace for those around me.

Let it be so.

Into The Valley (A Reflection)

It was initially described as a mysterious illness, originating outside of the country. Before everything seemed to tilt, I went to church and then traveled to North Carolina with my family. It was just like the flu, some said. It would be gone by July, a local doctor reiterated. When I got off the plane on March 11th of 2020, concern was growing exponentially. I had decided to quarantine out of caution, and then the following day a stay at home order was issued by the local government. Aside from essential businesses, we were on lockdown. 

Covid-19. Caronavirus. It was real, people were dying, and still are. I gathered I was high-risk, but learned that it was more so because my lungs had never fully developed (I had been on a ventilator as an infant). My mom frequently expressed that she was scared for me, and I was scared for my grandparents and my sister. I vaguely remember hearing about H1N1, Ebola, Zika, but there was more reassurance in how it was being handled. This time around, it seemed like all bets were off. 

By day, I was an anxious mess, mostly because everything was so unknown at the time. I hated the constant speculation about the virus in itself, along with what may or may not happen as a result. The news is never not on in my house, so that in itself was a challenge. I blasted music a lot and tried to journal. I didn’t want to eat, and found myself exercising more than usual. I started shutting off notifications and muting websites, which helped but didn’t stop me from doomscrolling (a feel-better attempt that always backfired).

At night, I would fall into a depression. I had just started genuinely getting involved at my church (my first time volunteering with any church, really), and to have the put on hold felt like a loss of possibilities when it came to connection and spiritual growth. A man that I could see myself dating went off the grid, and I had to literally sit with my feelings about it. My brother was on the tail end of his deployment, unsure of how he’d get home or when (after already going through the wringer back in January). And being the extrovert that I am, it was tough to suddenly be so limited in terms of what I could do or who I could see. 

I eventually recognized it as what is commonly known as a trauma response, and what followed is rather blurry. Walks were a saving grace. There were times where I read or watched movies for the entire day because I didn’t have the emotional capacity to do anything else. I Facetimed, Zoomed, and played silly games on Houseparty. I prayed, even when it got tiring and repetitive. And then I cried, waiting until late at night to truly let it out.

But what I remembered most was the little, now-significant moments: the feeling of sunshine on my face. A care package from one of my best friends (because I told her I missed Dunkin’ Donuts iced coffee). Listening to Jimmy Buffet and Kenny Chesney on the back patio as the weather warmed. Summertime was different, yet I was fortunate to get outside and be on the water, and did so whenever I had the chance.

In retrospect, I was incredibly fortunate both physically and financially. I’m grateful that I could support friends of mine who struggled with being alone, or were dealing with emotionally taxing situations in addition to the pandemic. Being a rock was part of what kept me going, even if all I could do was listen and validate and not let those people give up on themselves.

The anger didn’t set in until I started trying to get a vaccine appointment last month. I had long held-in anger at an incompetent administration who cared more about pandering to their base than being honest and working alongside health experts. When people cried, “My rights, my freedoms!” I wanted to scream that getting a haircut and going to a restaurant isn’t exactly a right, but a privilege. You don’t get to complain about supposedly being controlled or policed while simultaneously being against marriage equality, denying the existence of racial injustice, and refusing to see the disparities in healthcare. And you don’t have to like wearing a mask or agree with every decision being made, but don’t make things more difficult for those who try to protect the people around them, or can’t “just stay home” (as it’s often oversimplified). Everyone has the right to an opinion, but no one has the right to use that opinion to harm someone else.

I didn’t have the energy to argue in those moments, and I don’t always do well at thinking on my feet. When it comes to choosing physical versus mental health, I don’t have a solid answer. It’s not about following every rule to the letter, but rather, taking care of each other. How differently would this have played out (at least initially) had we collectively focused more on helping one another? How many lives would have been saved? 

How can some Christians say they love Jesus, while refusing to see and meet people in their humanity?

Contemplating the road ahead is an overwhelming thought, and the best way I’m coping is one day at a time. I hope we remember that what was accessible and doable during the pandemic is still entirely possible (especially for the Disability Community). I pray enough people will get the vaccine, or at least be open to getting it in the future. I pray that the generations shaped by this last year will live and love better than the ones before it. May we learn to show compassion to the collective suffering we’ve faced, and sit with one another rather than compare or compete. My we choose humility over superiority, even if our health seems to indicate that we’re invincible. And as life moves forward, may we build a culture of presence instead of constant productivity, and cultivation rather than instant gratification.

Yes, God will do His part, but we also have to do ours

Keep going. Just. Keep. Going.

Twenty-Nine

It was not quite a typical “quarantine birthday” as I was determined to avoid that, despite knowing that it would be different this year due to Covid. I experienced eating in an outdoor igloo for the first time, and my best friend and I made our own fun out of playing We’re Not Really Strangers and doing a photoshoot (with a bit of bubbly involved). The day itself initially felt weird, waking up to the last year of my twenties and doing my best to fight off the anxiety that  comes with trying to have reasonable expectations. 

My birthday has always meant a lot to me, and up until recently have been uncomfortable with sharing why. Living with a chronic condition, I’ve often gone along to get along for the sake of not being an inconvenience (at best) and not wanting to to bear the frustration of those around me (at worst). That’s only the tip of the iceberg, but it boils down to a birthday being the one day out of the year where I could vocalize what I wanted and how I wanted it. It’s a common attitude there’s some extra emphasis when you have this self-imposed standard to be the easy child. The selfless person. The compassionate one. Whether or not I have been, or if others would see it that way, is another story. 

It might have been the pandemic itself, or it might have been the gradual unfolding of 2020. Regardless, the desire to advocate for myself has been steadily growing and getting louder. I’ve alluded to it in previous writings, but learning and putting it into practice truly is a process. Carrying weight that isn’t mine, and taking responsibility when I don’t have to is a trauma response. Deconstructing and choosing differently involves a lot of grace, perseverance, and trying and trying again.

Self-advocacy is a huge step, especially when you’ve spent most of your life asking for assistance of some kind. The need to be helped and the need to be heard can coexist, and should never be transactional. I’ve known this in theory, but overthinking has often gotten the best of me.  One of the biggest challenges of this pandemic is having to sit with my feelings, wading through what requires deeper reflection, and what requires letting go of. It’s hard when I’m hurting or frustrated and can’t just go be with people, or seek out adventure on a whim due to the virus.

It’s exhausting to constantly ruminate on what to say, when to say it, and how. And the more I hold back, the more agitated I get. Of course there are times when my opinion isn’t required, and I’m aware of navigating circumstances when I’m overcome with insecurity versus confidence. There should always be a balance of considering viewpoints and feelings with pursuing self-care and things that give you joy. 

It’s not about getting what I want every time, but putting something out in the open so that I’m not saturated by anxiety and resentment down the road. Even if a situation pans out differently than I’d like, at least I did my part to the best of my ability. Growing in relationships, whether with people or with God, require getting out of your head and into your heart. A wise friend once told me that rejection is better than inaction, and I haven’t forgotten that since. 

There have been various small victories thus far: admitting what works and hasn’t worked when it comes to redecorating my room. Not hesitating to follow up on tentative plans if we’re still trying to figure out details. Being adamant about taking a ride-share to a dinner date because I wanted to feel more independent. Saying “because I want to” without a detailed explanation. As I publish this, I’m about to make the kind of phone call that typically has me crawling in my skin, but I’m not going to get anywhere if I don’t take initiative.

And it’s the small victories that I hope and pray will add up to breakthroughs, both personally and professionally. I’m cautiously optimistic, after having seen how everything can change and priorities can shift so quickly. But the work is still important, and necessary,

Here’s to speaking up, speaking truth, and progressing forward!

Bring It Forward

When it comes to relationships and vulnerability, there’s a lot of discussion on how to open up and share our experiences, but rarely how to navigate the sacredness and emotion of being on the receiving end. In my nearly three decades of life, I can’t recall a time when showing empathy in and of itself was the norm. Much of my childhood involved problem solving and attempted fixes, and if there wasn’t a solution, you weren’t supposed to dwell on it. Adulthood has shown me that life is a little more complex than that, and the saving grace is having at least a few people who are willing to sit with and or walk with me in various situations. 

I’ve learned a lot about being that type of person, and I think it’s one of the most important things we can do as friends, partners, and just human beings in general. How we do can be tricky to navigate, but there’s always room to grow.

Hold Space

I always try to look at it as an honor and gift when someone confides in me, or even if they’re just sharing more about their life that scratches below the surface. If they broach the subject, I let them have the floor first and don’t speak until they’ve said what they needed to say. Depending on the circumstances (i.e. talking face to face versus texting), I allow a few moments of quiet so that I can process what was said, allowing the opportunity for a response instead of just a mere reaction. If physical touch is welcome, a hand to their knee or shoulder is a subtle but meaningful way to create connection. I’m an emotional person, and I’d say it’s completely normal to tear up at times during the conversation (without changing direction or becoming hysterical). It’s also understandable to not know what to say (in the moment or at all), but you can never go wrong with “I’m grateful that you’re sharing all of this with me. I may not always understand what you’re going through, but I want to affirm that your experiences and feelings are valid And I’m here for you.”

Ask Questions And Check In

Whether before or after a conversation, questions like “How can I support you?” or “What do you need?” are paramount in showing empathy. In the early days of my recovery journey, I didn’t know what support looked like for me right away, but hearing those words allowed me to feel safe and communicate with that person openly once I figured it out (and had the language to express it). It’s not  just limited to a single conversation, and whether or not they say it, people always need something in the midst of all the heaviness. It might be meals, a hot beverage, or invitations to go for walks. It might be rides to or checking in after important appointments/meetings. Basic encouragement texts like “I’m here” and “I love you” mean the world, even if there’s no response. Empathy is not just about the moment, but the ride.

I go back and forth whether it comes to giving and receiving advice. Most of the time if I’m able to process pain or struggle out loud, I can eventually figure out how to move forward. As I’ve written this, I’ve realized my resistance often comes from the fear that the advice itself will be condescending or oversimplified. Not too long ago, I was talking to a friend about an unhealthy situation I had recently taken myself out of. At the end of our conversation, she asked, “Can I give you something to pump you up?” It was much needed wisdom, but with loving and affirming word choice.

Let It Be (Uncomfortable)

The reality is this: you will not be able to take away a person’s pain. You will not be able to change their situation, their heart, or even their outlook. You cannot force people to treat them well. And a difficult fact of life is that most things are not meant to be fixed; they are meant to be experienced, felt, and learned from. So as heartbreaking and frustrating it might be to hear about what a loved one is going through, keep in mind the importance of not making it about you. Be aware of using the word “negative” (a word I loathe because of how dismissive and projectile it sounds), as well as cliche platitudes. If someone specifically asks you to just be quiet and listen, respect that. And when you’re able to process your own feelings, take the time to ask yourself why you might feel the way you do.

As one who is almost compassionate to a fault, viewing myself as a project for a good portion of life, I struggle with the notion that “some people just can’t.” As set in their ways as some may be, I think it’s a matter of whether or not we want to. 

Yet even if the desire to learn (or unlearn) is there, that doesn’t take away the importance of having boundaries.

That can look like pausing difficult conversations, and then come back when one or both parties is in a better head space. 

Establishing that a child should not have to be a therapist for a parent (or any elder, for that matter). Even when the child becomes an adult themselves.

Refusing to be put in the middle of a conflict between people you care about.

Saying, “I care for you and I want to support you, but this is beyond my expertise. Can I help you find professional help?” 

“I’ve already listened, and you know what you need to do. Unless you make a choice, I’m not willing to talk about this anymore.” 

Most importantly, it’s always possible to do these things while still affirming and communicating love. 

And there is Grace. For when we react and project, or assign shame and blame. Grace for when that person overshares, especially at inappropriate times. For when we lash out, or end up completely isolating ourselves from the world. It’s never too late to try, and then try again. 

We can’t go back to pre-internet times, or life without social media. We can’t pretend that the world isn’t saturated with news and opinions, or pretend that it doesn’t influence how we see it. But we can bring it forward, a new way of relating and connecting with those around us. And while it might be different, who says it can’t be better than the decades before?

Inside

Off like a rocket it went

A brother dodging danger

A brief relief with a birthday and the beach

But when spring began it’s usual bloom

The warning signs began to blare

A virus, novel and like no other

From one corner of the world to the next

//

“Stay inside” reverberated some

While a so-called president twiddled his thumbs

Playing it off like a failed casino bet

Omission of truth, for who’s sake?

Declared a pandemic, despite the questioning and ignoring of common sense

Daily news briefs were almost too much to bear

Anxiety, chest pains, and lack of appetite by day

Depression descended as evening fell

//

“Routine, Productivity, Positivity!”

My body responding differently

I didn’t want comfort as much as I wanted personal connection

To physically feel common threads

My extroverted self a little lost in the hubbub

Afraid of losing the confidence I’d gained in the last year

//

So I stayed inside

Detesting “new normal”

Preferring currently reality

Though the unknowns loomed larger 

Than dormancy

A reprieve through walks and sunshine

Access to the water

Mom started a new chapter

The city came alive again

//

Behind closed doors

The desire to walk through fire

To support those who were struggling

To keep living, keep going

They needed me, and I needed them

Late nights

Deep conversations

Protective, patient, and learning how to hold space

Finding different ways

To carry them however I could

Capped by a reunion

A long time coming

//

And then the second wave

Predictable at one point

But could have been avoided

By collective responsibility and respect

The plea to stay inside again

Saved by the grace of changing colors and important milestones

I relished the tv specials

The snuggling up to read, watch, and just be

Real rest, without fear of missing out

My work in progress for as long as I can remember

//

But the fatigue is real

Body aches with unknown origins

Colder weather?

Lack of usual activity?

A response to stress?

//

Yet the most challenging aspect

Was not the confinement of four walls

But the confinement of thoughts inside my mind

Swirling around like storms

To reach out or give space?

To tell the truth, or pretend I’m ok?

Are you ok? Are we ok?

To ask for what I want/need

Or hold it in for as long as possible

//

Distraction could only do so much

When the healthy distractions weren’t always available

Overthinking, deeply feeling

Jealousy, more questions than answers

My prayers feeling dry and without heart

Sitting in the tension

I’m still learning

//

And as the calendar turns again

Cautiously Optimistic comes to mind

With new leadership

New possibilities

Changing seasons

A new year

//

I dream of music and dancing again

Lots of people

Opportunities for living

Being in nature

Assertive

Growing Confidence

Expression

Thriving

Roaring

Resilience (In The Age of Dumpster Fires)

One could say that I’m an embodiment of it. .

Resilience, before I could even comprehend it.

And yet, trying to harness it in 2020 feels like a joke. For most of us anyway. 

Cliche? Kind of. Overrated? Maybe. Necessary? Absolutely, yes. 

It feels weird to say this, but in a way it’s almost as if the pain from previous years has prepared me for this one. 

What Hurt You Isn’t Going to Heal You. 

My early twenties were full of anger and angst, mostly regarding transitions where I felt neither protected nor validated. There was some resurfacing of past trauma, and then retraumatization all over again. I spent a lot of time stuck in my head, which brought on intense loneliness and fear of abandonment.

I thought I needed an apology to move forward, and pursued it with reckless desperation. I longed for a kind of nurturing and assurance that I wasn’t going to get from those around me, and it would be a while before I learned how to set boundaries and have reasonable expectations. 

A few months ago, an ex (whom I’ve referred to as Ben) tried to come back into my life. While grateful to finally have answers, his explanation regarding the circumstances didn’t sit well with me. I didn’t want to be with someone who attributed a serious situation to bad luck, rather than taking responsibility for his actions. It was emotional, bringing up a lot of what I had already closed the door on over a year ago. I had to mourn the end of that relationship all over again, and for what? 

My point is, apologies for causing pain aren’t always the balm we think they are. They have to come from a genuine place of contrition, rather than manipulation or lip service. But to demand or wait for one is almost always going to hold you back, rather than push you forward.

There Is Room For Both. 

It’s becoming one of my favorite sayings, especially when it comes to dealing with feelings versus logic, or many all at once. Anger, sadness, frustration, and the like can equally coexist with relief and hope for the future. You’re allowed to acknowledge hurt and pain, while recognizing that everyone involved was doing the best they could with what they knew at the time. 

I can remember a sit down conversation that was a long time coming, and afterward my mind went blank. It was partially due to emotional exhaustion, but additionally I wasn’t sure how to feel. At the time, it seemed like I had to be completely at peace in order to put the situation in perspective. And then as I was sharing it afterward, somebody whom I admire and trust dropped a truthbomb.

“You don’t have to decide anything; feelings come and go, and what’s more important is how you deal with them.”

It was life-changing, and I wish I had grasped it sooner.

Reframing Helps.

Moving forward is tricky, especially in regards to when and how to do it. Ruminating on anything takes a lot of energy, and eventually I get tired of being pissed off or upset. Yet, it seems like the modern-day definition of letting go is to do so and never talk about it again, let alone think about it. But what if there was a better way? 

A different viewpoint does go the distance. The things that happen to you might actually  be happening for you. A relationship that ends is painful, but it can also be a freedom or a catalyst for much needed change. Job loss doesn’t mean that you’re not enough, or that you’re not cut out for your field. What might be right in one respect could turn out to be wrong in another. 

Life happens in seasons, and not all can be there to walk with you through each one of them. It means you’re growing and evolving, and that is more than okay. 

How I carry on often comes down to these two questions: What do I have control over, and what do I not? Occasionally it’s what other choice do I have? I’ve had my heart broken, and despite the passage of time, am still triggered by a song, a place, or an event. The bitterness and sadness resurfaces, where the best thing I can do is acknowledge it and then let it be.

However, there are definitely exceptions: I will never tell a parent who outlives their child how to grieve, and vice versa. There are no silver linings when it comes to abuse and/or assault, and putting that on survivors is a slap in the face. Yes, there is healing, but that and the tragedy should be treated as separate circumstances. 

Practice Real Self-Care.

It sounds like a fluffy little buzzword, but taking care of yourself is a combination of doing the work and also seeking out joy. I’m an advocate for taking time to reflect through therapy and writing, seeing what role I played in a situation and what I’ve learned from it. Books and podcasts are like an extension of that, but in the sense of soaking in and meditating on it. As human beings, we should always be striving to grow and improve ourselves, even when it’s incredibly difficult. I don’t like realizing that I’ve hurt people, or most likely I contribute to a problem. But the work never hurts as bad as the wound itself. 

Like working any muscle, you have to allow yourself time and opportunity to rest. Go for a walk. Blast your favorite music and throw a dance party. Eat your favorite foods. Dress up merely for the sake of doing so. What makes you feel alive is just as important as crossing things off your to-do list. Whatever you do out of love and enjoyment is never a waste of time.

Staying grounded, particularly on a spiritual level, is important to me. I’m learning to turn off the news and put my phone down, even at the risk of missing out. While necessary to be informed, it doesn’t help if I’m in a constant state of anxiety and distress.

As I write this, I’m experiencing what is now being called pandemic fatigue. I understand the need to follow the guidelines, but from a mental standpoint, it doesn’t make it any less tiring. I’m now just getting comfortable asking, “can I cry with you?” while holding space with loved ones who are struggling. When I’m being vulnerable, it’s not always about looking for comfort, but wanting to feel connected and close to people. It’s unfortunate when real, honest expression is mistaken for negativity, and it bugs me. 

It’s one thing to be independent, but another to do so where you’re afraid to need anybody entirely.

Many of us are in the same storm, different boat scenario right now. We all want something to look forward to, and a light at the end of the tunnel. 

And we keep going; one day at a time, one foot in front of the other.

The Unintended Impact of Disabled Inspiration

“So, how’s the job hunt going?”

I was at an appointment with my doctor, a yearly checkup or something to the effect. He was trying to make small talk while looking at a clipboard.

“It’s going,” I said. “I’m filling out job applications, going to networking events, reaching out to people on Linkedin, and honing my overall skills.” I elaborated that I wasn’t giving up, and proud of myself for trying to build a life in Chicago, even if that meant having one foot in and one foot out.

“The world needs more people like you,” he said without looking up. “People that realize that there’s more to life than just playing video games and living off government money.”

Huh? His comment carried an uncomfortable implication, an unspoken expectation. I left with a kind of uneasiness that I couldn’t explain, and for the longest time couldn’t figure out why.

///

I’ve become part of and have learned a lot from the Disability Community over the last year. My first steps were reaching out to a woman whose Facebook post had gone viral, needing validation regarding a long-desired dream. I’ve wanted to write and publish a book but questioned the right to tell my story due to having a lot of privilege as a white woman who can pass for being nondisabled most of the time. Her answer was a resounding “YES!” and that disability is fluid in both condition and experience. I joined online groups and began following prominent figures. I learned about the Americans With Disabilities Act, my own internalized ableism, and how SSI keeps many recipients in poverty. I read, watched, and listened as much as I could, and I’m still learning. It helped me begin to grasp what I previously didn’t have the language for.

When living with a disability, you’re either pitied or put on a pedestal. I’ve been both at one time or another, and it’s been why I’ve been so hesitant over the years to write for large publications and truly plant myself in the public space. I don’t like the idea of telling people what to do and how to live their lives, especially if I’m not in their shoes. I was (and still slightly am) afraid of being idolized to the point where I feel like I can’t be me. I wrestle with that enough as it is.

I’ve only been called an inspiration on rare occasions, but it’s been equally implied in other ways. The term may have fueled my sense of determination growing up, but I can no longer deny the problematic nature of the word and the weight that it carries.

It Has the Wrong Focus

When hearing stories of those facing more barriers/challenges, the common assumption is that the person isn’t working hard enough or saying/doing the right things. This leads to a harmful misconception that most disabilities can and should be “overcome”, whether by sheer willpower or divine healing. “Inspiration” puts the sole responsibility on the disabled person to not only make everyone around them comfortable, but they often must rely on that comfort in order to fight for and obtain basic human rights.

What most people don’t realize is that for decades, there has been a system at work that aims to discriminate against disabled folks, particularly in the workforce, healthcare, marriage, education, transportation, and even art. (I’m sure if Trump and the current administration had their way, we’d be locked in institutions again and out of public view). Rather than lauding (or pushing for more) we need to examine how society has systematically failed to see us and treat us as human beings, and then hold it accountable.

We have the technology. We have the resources. Any supposed reason not to address the system going forward is just an excuse.

It Removes Agency and Projects Identity

I won’t deny that grit, determination, and resilience are part of why I’ve reached certain milestones and accomplished a number of things in twenty-something years. But attributing “inspiration” to part of my identity has often made me feel like I have to be “on” all the time, and I end up struggling to tone that fierceness down when it’s not needed. I actually have a soft, romantic, and even sensual side, and I’m in the process of figuring out how to show it more often. I have to remind myself that I no longer need to spend my time and energy proving my worth, and I’m allowed to just rest and be.

Everyone has a right to choose how they identify, and reject terms and phrases put on those who have never been where they have. (Most of what’s deemed derogatory were done so by those without disabilities, believe it or not). I’m not “semi-disabled.” I have a right to ask for help (without being talked down to or infantilized). And I’m not being selfish by refusing to deny my needs related to having Cerebral Palsy.

I’m realizing that I don’t want to attempt to do everything, especially for the sake of being a badass. I don’t want to be everything to everyone, particularly if I have to forsake my mental and physical health in the process.

It’s Just Awkward

Imagine if someone were to approach you, and the first words for an introduction were “Hey sexy!” or something along the lines of that. Whether it was intended as a compliment or a come on, there’s something about it that doesn’t feel right. I’ve been there plenty of times, and in those moments I wish I worked up the nerve to say, “You don’t know me, so how do you truly know what makes me [insert adjective]?” I’d probably be accused of not being able to take a compliment, but if I sense that it’s not genuine, I’m not going to take it as one.

And I think that’s why much of the Disability Community bristles at co-opted adaptability, especially if they’re just trying to survive in a world that wasn’t built with them in mind. Some appreciate it, and they’re entitled to do so, it doesn’t mean everyone should be lumped together. If a disabled person says “this is hurtful” or “this isn’t helpful” that should be respected, full stop.

///

When it comes to giving praise or speaking highly of anyone, I’ve learned to use “I” statements to communicate that I’m taking personal responsibility for what I say and how I say it.

“I admire you,” or “I’m grateful for you” doesn’t seem like much, but it goes a long way.

 “Thank you for sharing your truth,” or just, “Thank you for being you,” speaks volumes.

For me personally, it melts my heart when individuals take the time to ask me what I truly want, rather than trying to convince me to take what I can get all the time (both personally and professionally)

Context is equally important, specifically how long you’ve known the person for and what parts of their story they’ve shared. If you’re at a speaking event or conference, take in and sit with what they actually said before sharing what you’ve learned or what it means to you. There’s a time and a place for everything, and a first meeting isn’t necessarily it.

In a culture that values productivity and defines individuals by how they contribute to society, I want my message to be that what you are capable of doing matters. The world needs people who can do the little things as much as the big things. It’s perfectly valid not to want to be the next big polarizing figure, or the subject of inspiration porn (that’s another subject for another time). You are worthy of living life as you see fit, regardless of who tries to make you feel bad about it.

For those getting defensive about this subject, please check your ego as well as your privilege. Impact is always greater than intention, and if you don’t live with a disability, you don’t get to tell the disabled how to live. Part of being an ally to marginalized communities is the willingness to have some humility and be corrected, even when it doesn’t feel good.

I know that many will still look at disability a certain way, regardless of how much education and insight there is. And I know that people will still look at me in a particular light, regardless of how I ask to be treated. But I hope that my closest family, friends, and even potential partners will respect where I’m coming from, regardless if they agree or not. I’m still learning how to explain what I often don’t have to think about, because I live it on a regular basis.

And now the question is, if you’re so inspired, what are you going to do about it?

When I Talk About…

Initially I wanted to tell as many people as I could, or at least many as I thought needed to know. When you keep a serious problem like an addiction/disorder under wraps for a length of time (whether intentional or not) you suddenly don’t want to have a filter anymore. You want to tell the truth, all the time, believing that’s exactly what you need to do to heal. And perhaps in a way, I absolutely needed to back then.

But as the saying goes, not everyone can handle the truth. And my truth is that recovering from an eating disorder is complex and multi-faceted. Three years later, I’ve come to regard it as something sacred, a big part of my life, but a part nonetheless that not all can be part of. There’s an assumption where if you don’t openly discuss the absolutes of who you are, you must be ashamed of them. Yet what if it’s not shame, but protection, that motivates the quiet? A healthy protection of progress, and protection of self.

///

My best friend asked me how I wanted to celebrate, given that the pandemic had put the original plan on pause. My immediate family was supposed to reunite in Florida after my brother’s return from deployment, and we’d even spend a day at Disney. The courage to share with my mother what that trip would mean to me, what I had accomplished personally, was enough of a celebration in and of itself. It was tough to come up with anything else beyond that at the time.

I dreamed the night before the three-year mark about being surrounded by cakes, each one looking too damn delicious for words. And the morning of the seventeenth, I finally came up with a short-term idea (well, mostly). It should involve macaroons or chocolate truffles (two of my favorite sweet treats). I want to get dressed up and go dancing when it’s safe enough. Do a photo shoot. Anything that allows me to appreciate food and my body.

And yet, recovery is so much more than that, and I want it to be a focus as I continue to grow and evolve: it’s about getting in touch with yourself, valuing yourself, and ultimately coming back to yourself.

The romantic in me. That sense of child-like wonder and awe. The sensitive smile with a tender heart who cries easily. She doesn’t need to be found because she’s always been there. She just got buried under a lot of garbage for a while. And though I’ve done a lot of work in terms of getting to know her again, there are aspects I’m still learning to accept and embrace.

///

As Sunday ended, I had a hard time falling asleep, so I began to pray:

I’m sorry that I haven’t always loved and cherished this beautiful creation that you’ve given me.

I’m sorry for when I didn’t show it compassion or understanding.

I’m sorry for the ways in which I allowed my body to be disrespected and used. I wasn’t strong enough back then.

Thank you for three years of healing.

For learning how to honor, rather than avoid hunger.

For trusting myself enough to know what I need when I need it.

And thank You for walking with me through it all, especially in the moments when I’ve felt very much alone.

Of course, there is grace; grace for when I wake up too late and feel like I don’t have time to eat breakfast because I must play catch up. Grace for when I chug a protein drinks or various snacks just to get something in my stomach. Grace for when I the constant news of COVID-19 made me want to hug the toilet because I couldn’t hug anyone else. When I fear that gaining weight will no longer mean I’m beautiful, because that’s what I’ve known and was used to

But I am more than that. I have my heart, my mind, and my spirit. My church, listening to podcasts, reading books that make me think, quiet time, all remind me that I have a body, but other parts of me just as much nourishment.

In some respects, with diet culture so prevalent, I’m always going to struggle. I’m now just finding the gumption to call BS when I see it. And it takes a lot of mental energy to let things go when people around me just don’t “get it.”

There are good days, and there are hard days. I’m grateful to be part of each one of them.

A Virus and A Reckoning

 

There were initially whispers of warning

Something is coming, sickness will spread

That were largely quieted by selfish ambition

Self-preservation  over people

Stocks over saving lives

Drowning out concern with cries of “hoax!”

Denying experts the right and necessity to speak

And hiding the truth from all who needed to hear it

Not a big deal

It will go away

 

But it hasn’t, and now hear we are

Hunkered down to ease the rise and chaos

Daily life, collectively, has come to a screeching halt

Like misbehaved children, we are forced to think about

What we should have done 

In terms of heeding the cries of science

Weaponizing faith and privilege instead

Of being mindful and prepared

 

For extroverts, a new territory

How long has it been since I last stayed home this long?

No social gatherings, church, or bopping around the city

Like living in an alternate universe

How the actual hell did we get here?

But I welcome the resting, reading, and reconnection

 

And from this I’ve seen

That connection is essential 

To the human experience

Conversation, vulnerability

And physical touch

The latter which I crave

And miss the most

 

But where do we go from here

When a lack of leadership and transparency

Have brought us collectively

To such a dark place in history

A legacy stained by lies, corruption, and sickness

Those on the right side of history trust facts and science

More than blubbering buffoons 

 

I pray for healing, restoration, and protection

Accountability for politicians that looked the other way

That we may learn from this devastating season

Taking a damn good look at ourselves

What many have enabled

 

There might be dollars and so-called power in big business

But solidarity in the small and local

Heroism belongs to the every-day workers who cannot stay home

God go with all of those on the front lines of this crisis

Let us support them, honor them, and lend them our hands

For there is speaking truth to power

And power in speaking the truth

 

I anticipate the day

When I can wrap my arms around the people I love

Dance in public

And worship in community

A celebration unlike one I’ve ever felt or seen

Until then I pray for peace and ease

Waiting and expecting

Let it be so

When You Want To Be Ordinary

“Do you want to know why I bop around the city so much?” I asked him one day. 

“Why?” 

“I could be wrong, but I feel like there’s this whole thing about how twenty-somethings should be traveling and seeing the world as much as possible, and more so be willing to do that by themselves. For me, I can barely get through an airport without needing some kind of help, and being alone in a foreign country for an extensive amount of time seems scary and dangerous (especially since I have a physical handicap). By adventuring in Chicago, or even other cities around the country, I have that freedom to experience and try new things while still having that sense of safety and comfort of home.” 

///

It started during my junior year of college, where I began to wonder if I was giving as much as I was taking. 

After graduation, during a conversation with my primary care doctor, he told me that I needed to be an “example” for other adults with disabilities, and show them that there was more to life than just playing video games and living off supplemental income. It left a bad taste in my mouth, as most primary care doctors do when they act like they know what they’re talking about. 

And now as I’m job hunting and simultaneously reevaluating what direction I want to take my life in, that question continues to plague me: Am I doing enough? Am I living up to my potential? Am I fulfilling my purpose/calling? 

And while these questions are worth asking, the answer is much more complex than just ‘yes’ or ‘no.’ These questions are a symptom of our busyness-is-a-badge-of-honor culture. As a woman with Cerebral Palsy, it stems from realizing that those with disabilities are either pitied or put on a pedestal, and the latter becomes the subject of inspiration porn/objectification. And that’s what scares me about doing The Big Things, such as writing a book, speaking in public, and/or becoming a full-blown internet celebrity: I’m terrified of losing my humanity, and becoming a stationary fountain of wisdom in the process. 

It doesn’t happen to everyone, but most people that I’ve seen slaying and hustling and making shit happen all at once  are also suffering on the inside: they’re physically and emotionally exhausted and they have to practically go off the grid in order to recharge. This is what marketing is. This is what making a living is. And if you want to make an impact, this is the kind of sacrifice you have to make. 

I call bs. Not because I have all of the answers, but because that type of rhetoric comes from listening to a cacophony of popular opinion as opposed to actively listening to individual experiences and one’s intuition. 

And while I’m still learning, this is what I know now: 

What you are capable of doing matters. You do not have to defy the odds all the time, or ever if you really don’t want to. You do not have to kick ass for the sake of making anyone feel better about themselves or more comfortable with your situation, especially if they’re able-bodied. Embracing what’s true for you does not equal mediocrity, but maturity. 

You are allowed to set boundaries, and you are allowed to have fun. Whether it’s shutting down your phone/computer at a certain time, or saying, “I support you, but I’m not qualified to treat you or heal you,” limits are absolutely necessary. I’m a huge advocate for discussing mental health and a host of other topics, but I also need play time and pleasure. It’s part of why I often send my people memes as much as I send inspirational quotes.  It’s part of why I enjoy watching Disney movies and reading People Magazine on a weekly basis. There is a lot more light to life than just listening to podcasts/sermons and reading self-help books. Especially if you experience brain overload or vulnerability hangovers quite easily. 

‘Living Your Best Life’ DOES NOT make you better than anyone else. You wanna be the next sexy, glamorous, entrepreneur? Godspeed my friend, and more power to you. But you are not superior to those that choose a trade school over a traditional university, or are doing what they have to do in order to support themselves It’s not always possible or practical for people to pursue something just because they’re passionate about it, and your passion might not be the thing that provides a paycheck. God needs those who are willing to do the every-day as much as He needs those who do the once in a lifetime. Your worth does not depend on how you contribute to the economy, or whether or not you contribute at all. And if you feel the need to preach about doing things, ‘like everyone else’ please check your damn privilege. 

Life is filled with a rhythm of rest and movement, and one that many overlook because they’re worried about living up to old, outdated expectations. It’s entirely possible for self-love and self-improvement to coexist, without the supposed need to choose one or the other. And just because you take a particular path for the time being does not mean you can’t ever change direction, change your mind, or just stop and be for a bit. Comparison is not only the joy, but the thief of everything that matters. 

I’m all for finding treasures in this world, but I’m also one for exploring my own backyard. 

Some call that backyard a jungle, I call it a playground.

Where some see loneliness, I see freedom and opportunity. 

Writing. Public Speaking. Advocating. Creating.

Maybe it’s unconventional, but I’m just doing my thing with great love. 

Perhaps it’s just a season, or maybe more. I do what I can, and let God take care of the rest.

IMG_5489

(photo by Rachel Loewen Photography)