Just like death, disease is taboo in much of the Western hemisphere. We are marginally more comfortable navigating disability — or, rather, visible disability. However badly understood disability is, disease is even worse so. The chronically-in-pain and bound-to-bed have nothing to show for their plight. You must take their word for it, otherwise, their pain isn’t just invisible: it isn’t real.

At times I’ve envied the wheelchair user, the one paralyzed waist-down who has learned to move independently and purposefully. I’ve envied her from the discomfort of my bed — to which I’d been bound three months straight. I’ve envied the armless who has developed a way to navigate the world, work, and play. I’ve envied her from the darkness of my pain, which ripples through my body, nestling in my joints and brain. In truth, I’ve envied my past self, the one who didn’t know my current state.

In my illness, I’ve developed a compassion and empathy for the unhoused I couldn’t have come to know otherwise. Were it not for the freely given and merciful care of my family (and now new husband), I too would have found myself on the streets or, frankly, perhaps even dead. All four of my limbs visibly intact, who would think me incapable of working, sustaining myself, or making my own meals? There are things the eye can’t see: one of those are invisible disabilities; another is the path that led the unhoused to the street.

There is no blueprint for living with a disease; between flare ups and remission you build your own. Inevitably, it will be wrong, so you revisit it time and time again, becoming varying levels of discouraged and optimistic in what feels like a rollercoaster that knows no end. I can only speak of my own experiences, but I’ll rebuild dreams and plans for a future where remission is all that’s left of this menacing shadow, only to be hit by another wave of disabling fatigue and pain.

And yet, in this life I continue to find love and purpose, comfort and friends, and hope in a horizon that meets me day after day. There is something indomitable about the human spirit, a fire that burns even in the absence of tinder. So, after every negative feeling felt and journal entry that comes to an end, inevitably I find a sun mending my heart with the warmth of its rays.

When I was little, I received the great privilege of a rigorous and robust Western classical music education. I would study in the conservatory for endless hours — from mid afternoon until late into the night. When, after some two years of studies I was deemed “not apt”. I was forced to repeat the academic season. Putting aside the shame I felt at the rest of teachers, peers (and their parents) being aware of my lack of aptitude — evidenced by the fact that I was now attending class with students a year younger than me —, the absence of confidence I already had on my abilities was nothing but aggrandized as it now became official, two words stamp on a school report; it was no longer just on my mind, it was confirm beyond a doubt.

I left the conservatory fifteen years ago and, while I continue to play the violin, I must confess I do struggle terribly with it. I struggle with the way playing makes me feel and the way I wish I could feel instead. Copious amounts of committed inner work – from therapy to journaling, passing through prayer – have helped me to loosen my shoulders and unclench my jaw as I play; but the truth is it still hurts. The pain can sometimes be so intense I have to step away from the instrument for very long stretches of time, even months.

This pain, of course, is not only physical. Further, this pain isn’t solely due to my playing the violin, though this I didn’t come to learn until earlier this year when I was finally diagnosed with fibromyalgia.

While there is still some conjecture within the scientific community as to what actually causes fibromyalgia, we can at least agree on most of the symptoms. Joint and muscle pain can be incredibly debilitating, however, as it comes and goes in waves, I find it inconvenient — mostly. The one aspect of this sickness that keeps me tied to my bed, away from friends, and in a cloud of discouragement is the excessive, unrelentless, and chronic fatigue. I never knew it to be possible to experience exhaustion so intense that the mere action of turning around in bed would feel insurmountable; never mind washing dishes, walking to school, or submitting an assignment.

While my mind has grown in strength and resilience and I can look at the future with optimism and envision a life where I am able to attain my loftiest goals, day to day I struggle with feelings of inadequacy and disappointment. Some of my greatest fights of the mind involve the reality that I am not working enough to support myself or even cover most of my basic expenses; that I sometimes rely on food deliveries and that said deliveries may at times become more habitual than needs be; and that I am unable to perform in both school and my areas of interest to my full potential. Nevermind that I choose to work but my body simply can’t, or that I do often need to food delivered since I can’t find the strength to cook for myself, and nothing to be said of the fact that physical and cognitive fatigue will inevitably difficult my ability to study, write, and compose.

I understand these realities but so what? My brain, when unchecked, will present the following pattern as the most reasonable line of thought: I am already reliant on scholarships and must work twenty hours a week in order to prove my zeal to self-sufficiency, scholarships won’t last forever, money is running out; on that note, I should not have food delivered and the fact that it becomes an occasional habit shows my lack of responsibility — instead of putting the money people in good faith have poured onto me, I am burning through it; and in order to prove I am committed to my studies I should do a lot better at school than I am doing. Basically, all in all, I am irresponsible and unworthy of any help.

I don’t always think like this. You know, as well as I, that humans are complicated and multifaceted. So, these emotions are layered with a sense of optimism, contentment, and confidence that I wasn’t able to plaster in this essay. Whether they are layered on top or at the bottom largely depends on the day.

There is no grand morale to end this piece, I simply wanted to work on lifting the curse one little choice at a time. Today’s choice is to share my story, however imperfectly. Today’s choice is also to put up an essay every week, no matter what — what it reads like, what I think of it, what I feel like, etc. I’m holding onto the hope that this choice will extend onto next week, stand up tall to the titan that is perfectionism and say “Hey, I’m not going anywhere”. And I hope that as I continue to do something that I love — though I feel must be done well, if not perfectly — I’ll be able to one day vanish the curse or, at the very least, regain my senses and rejoice in success, even in its presence.

I have started to unclench its fingers from around my throat . I breath better today than I did yesterday.

With love and much, much hope,

Natércia

Over a period of two years I had gained more than fifty pounds: health struggles, depression, and an overall lack of consistent exercise had contributed to this. I believe most of us don’t quite realize when the big jump happens because it comes on so steadily — I didn’t notice because it was sudden. One semester I fit just fine in my jeans and, as if overnight, I could no longer get them up my mid-thigh the next. I went through a lot of emotions: first, denial; which was followed by defeat, then disappointment and, finally, love and self-acceptance. I figured this would be my new normal, so I procured myself some clothes I could feel great in and went about my way, as cute as ever.

What prompted me to seriously consider losing the weight, however, was contemplating the future I hoped for: an active life, feeling comfortable in my skin, healthy pregnancies, being able to live into my elder years feeling strong, and, above all, ensuring I could be as fit as possible for my children. Funny the things moms are capable of doing, even before they get glimpses of their little ones. You see, my childhood memories of my own mother are riddled with her spending time in bed and being in pain; this is something I want to work on avoiding if at all possible, and if not, well — we’ll cross that bridge when we get to it.

So, I decided to lose the weight. Now, in retrospect, I realize that it was always possible, but I’d be lying if I told you I thought this to be the case all along. The beginning was, most likely, the hardest part: not being able to anticipate the ending, being unsure about whether this would work, not knowing how long it’d take, etc. So, like with most things we begin in life, I was hot and cold for a while. Later came the progress: seeing the number on that scale go down was cause for celebration, but most of the times it just reminded me of how far I was from my final goal. Eventually, there’s the plateau: I’d be stagnant for weeks, sometimes months at a time — obviously, not a fun place.

But I kept at it. Eventually, I arrived where I am today, a place where I can comfortably fit in most of my old clothes and think myself capable of reaching my target weight. In a few minutes you read about a year and a half worth of work. So, to not make a long story any longer than it has to be, let me summarize some of the things I have learned through this journey, so that you too may benefit from these little nuggets of wisdom without needing to lose 30+ pounds.

In all transparency, most things I thought I wasn’t build for, or I couldn’t accomplish, I don’t hold true anymore. I now think I can lift heavy, run races, and become an athlete. I also think I can take my violin playing to the next level, build a thriving career as a writer and, all in all, attain my dream life.

It has taken me over a year to be where I am now but, what if I keep going? Maybe I can all do pull ups, show abs, and run a marathon. Consistency and patience cannot be bought — and that’s ok! In a world where we rush through the dreams we once had, why not lay back and slow down to notice progress? For, you see, it wasn’t losing the weight that change my paradigm about life and the world around me, but navigating through the journey.

I hope this serves you. May you embark on your journey, friend, and may you do so wholeheartedly.

What has life taught you recently? Let me know in the comments!

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Querido diario:

I feel so overwhelmed I want to cry. I feel uncomfortable in my own skin, bloated, tired, and tight. I've been told that I crumble — it's true, my body doesn't seem to be adequately built for stress. In fact, it doesn't seem to be built for stress at all. 

Nothing particularly tragic has happened, that is, nothing other than the fact that it's finals season, which is a synonym of insomnia, nightmares, tummy aches, restlessness, and a dozen other cute little symptoms that my body tends to host over this, so wonderful, time. I used to wonder if there was something wrong with me as I observed my classmates function with a certain level of normalcy I wasn't, in spite of my most profound efforts, seem able to replicate. Turns out there was something wrong with me — chronic illness. I think when I voice this people might be taken back and not be quite so sure how to respond, however, to me this realization is, if anything, cause for celebration. I didn't become ill the moment we discovered something was wrong but, rather, something wrong was discovered because I was ill on the first place.

So, yeah. My body isn't really built for stress and, when it succumbs, my mind has to work overtime not to follow. 

Right now, everything seems so overwhelming it's hard to keep up with those routines that would most help me care for my health: exercise, sleep, healthy eating. Those things seem to be the first ones to go out the window but, perhaps, that's because when we're running on fumes, they are no longer easy daily activities — to me they feel like an uphill battle. 

In French there's a word I find difficult to translate into English: basculer. It's akin to pushing, pulling, and stumbling — the way people would fight their way in and out of a busy underground carriage in overpopulated New York City. That's how I feel creative thoughts are entering and moving through my mind right now. I've been thinking so much about sharing my writing in more effective ways recently, that I've not been able to avoid overwhelm. I mean, all these thoughts collide against one another making such noise within the walls of my head, it's hard to think straight. 

I want to write, and I want to be recognized as a writer, I want to have a following, and I want people who enjoy my work. But I also feel this guilt and shame that paralyzes me. I don't want to spend my time googling strategies to grow on Substack, and I don't want to note what themes are most trendy, nor do I want to engage in the old high school "follow-for-follow". I don't want to feel disingenious, and I don't want to lose sight of what really brought me here in the first place. I want to remain faithful to my values, that is, striving to be good and kind. I'm tired of being told to subscribe and follow and like, so I don't want to do that — but I've also heard that's how you grow your platform. And I want to make money but I also don't want to sell my soul to promote views, values, businesses, and lifestyles that don't stand up for ethical practices. Ugh. Push and pull. And noise, noise, noise! And then, fear. What am I supposed to do? What's the right thing?

What I do know is that when I write I come to better understand myself, and that's something I am not willing to sell — not today and, hopefully, not ever.

All in all, I must say this: life is still so beautiful. I mean, I get to struggle with my health which allows me to embark on yet a new adventure of goal setting, growth, development, and learning. I get to struggle with this new way of writing, and through it I'll learn how to better stand up for my values and beliefs and, who knows, perhaps even come to better understand them. You'll likely have many days like me. You'll be tired, worn out, and confused. But I hope you'll be able to turn back to these entries and recognize that everything worked out. There's a beauty to life that cannot be overstated — that beauty cannot come without the struggle. May you find God in the doubt.

With love,

Natércia 🌻

While some of my classmates likely rolled their eyes, I stood — rather quite proudly — in front of the class, excited to embark on a journey that would transport me elsewhere. Writing stories was my favorite assignment to receive as a primary school kid. There weren’t many things I felt came naturally to me, so writing became a refuge and a place I could turn to for validation. My brother, on the other hand, appeared to be magically gifted at everything he laid his hands on: music, singing, drawing, cooking, and with time, writing. I was safe though, for throughout my childhood he displayed no interest in the art of literature — not in any of its forms.

So, knowing that, in my little rural school of a handful dozen students, my ability to weave words together in a way that built nonexistent realities set me apart, gave me a sense of pride and confidence I was unable to attain anywhere else. Which takes us back to the beginning.

As I stood, ready to dive into a world of my own making, I knew (but cared very little) that my classmates would find my pages upon pages of writing tedious. I have since forgotten how I justified this lack of interest — jealousy, perhaps? Bless me! The truth is, I didn’t write for my classmates — I wrote for myself. I wrote the stories I wanted to read.

Many things have changed since then: I am far more self-aware (thank the Lord!), have greatly improved my writing skills, no longer feel a sense of competition with my younger brother (he’s an amazing writer now too, by the way), don’t seek validation from external sources (or, at least, I try not to), and have an unprecedented sense of confidence in my ability to conquer even those things that don’t come naturally to me. One thing, however, hasn’t changed. That is the way writing is therapy, father and mother, lover and friend, and a safe place for me to land. I continue to write what I want to read, but perhaps with greater ease, I write what my heart harbors.

It would be a lie to say I have not considered, dreamed of, and pinned for a career built around the written word, however, I have also noticed that, instead of giving me wings to fly, everytime I write thinking of someone other than myself reading these words, I feel a very real pressure on my chest (as I do now). Hands wrap around my torso, hoovering over my ribcage and applying a pressure that leaves me out of breath. I want to cry, I also want to close my laptop and turn away from what once gave me life. This is one of the many reasons why I think monetizing my hobbies would be difficult for me. I guess that, in thinking about the reader, I don’t feel as free; rather, I am accosted by a pervasive need for perfection I know not otherwise.

I guess it’s the ugly, ugly head of perfectionism creeping up again. Perhaps I was born with this shadow, though I likely developed it in my early childhood; either way, writing becomes the poison that breaks my spirit and darkens my confidence when I think of taking the leap: sharing on larger platforms, pursuing it with more “seriousness”, trying to reach a larger audience, etc. Honestly, I’m scared. I’m scared because I do really want to keep writing for myself, I do really want to keep finding light in this so-intimate space, but I do also want to reach wider audiences, I do want to build a following and a name for myself, and I do want to know I’ve touched people with the word.

I’m scared because what if, in the process, I kill this light that has brought me happiness for so long, what if I can’t find balance, what if is doesn’t come naturally to me? What if it isn’t perfect? Other questions arise: what if I actually start to share my writing, hoping to reach people who will love what I have to say as much as I love to say it and, then, no one has anything to say? What if they don’t like it?

Isn’t it funny? The human experience, this journey we all share albeit with such divers expressions. Who knows, truly knows, the human heart, or the human mind, or the motivations that guide our actions? I have my own beliefs on this matter. But, alas, I digress. In typing away these feelings of my heart I am coming to better unravel the mystery of my mind, and come to understand this one truth: that something so good, can also be so bad, if we don’t have the right heart.

Con amor,

Tu Natércia

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