Sky also belongs to the birds without wings

By Aiswarya Asokan (South India)

A group of birds flies over the ocean. A pastel blue, pink, and yellow dawn is in the background.

A couple of decades ago, when schools were shut for summer vacations, all the cousins returned to Grandpa’s house to spend the vacation. It was bedtime, and all the children secured their place in the bed, waiting for Grandpa to narrate a story before falling asleep. It goes: 

“Once upon a time, there lived birds without wings, which deprived them of the joy of flying freely in the sky and experiencing the vast beauty of sky and land. Therefore, it spends all its time in the land, trying hard to find its food and merely surviving.

This made the birds extremely sad, and it was believed God had cursed them. Time passed, and it became even more difficult to thrive, then God called them and ordered them to carry the weights of some more objects. Birds pleaded to the god to take these weights away from them, but he disagreed. At last, there was no other way other than to carry this burden.

But to the bird’s surprise, it started floating in the air; the weights that dragged it down were now enabling it to fly. What a pleasant surprise: the weights that caused a burden to the birds have transformed into wings. Only then did the birds realize the weight it carried this long has equipped it to fly high and conquer heights.” 

After all the fun and games and a cozy bedtime story, I dozed off to sleep but woke up abruptly with a bit of discomfort inside my tummy; I had to throw up immediately. Everyone had to wake up in the middle of the night and clean the mess; maybe my stomach was upset from something I ate the day before.

Such incidents occurred again and again, maybe vomiting or else diarrhoea, sometimes some uncomfortable feeling inside accompanied by headaches (later on I learned that these feelings can be named nausea, bloating, abdominal cramps, and heartburn…). I hated any kind of physical exertion, whether a dance class, sports, or walking; Physical Education periods were my worst nightmare. Getting into menarche doubled down the sufferings. I was always clumsy with things and had a lot of pain carrying stacks of notebooks from one classroom to another, carrying my school bag, and climbing stairs to reach the classroom. I used to pant like I had participated in a marathon after making it to the classroom each day. It even demanded a good deal of energy just to complete a proper head and body wash. I used to collapse into the bed after a proper shower. But how to gain some energy back? Okay, let us concentrate on food, but however you try to stuff yourself with food, it just bounces back, putting yourself in much more trouble. And visits to the doctor turned out to be a normal stunt just to repeat the cycle once again. Innumerable nights spent tossing to and fro in bed, squeezing the pillow, with frequent visits to the washroom in between, wondering when I could breathe in peace with a perplexed mind not knowing what’s going wrong. This is usually followed by a week where you have to live with an empty stomach if you need to forget the pain.

It is frustrating to navigate a life that is like walking over eggshells. Even the so-called happy normal days come with a lifespan of a firefly. It's so unpredictable, and all your efforts to mend it can go in vain. This leaves you with a heavy mind full of rage and despair. On the flip side, this journey gives you the resilience, endurance, and wisdom that no exams or university education can ever give you. Once you harness this energy, then the sky is your limit. It teaches you to be humble, empathetic, and to live in the moment. But still sometimes I feel deep inside Mother Teresa was right when she said, “The hunger for love is much more difficult to remove than the hunger for bread.”

Image from Unsplash.

Winds of Perseverance: The Crohn’s Chronicles

by Rifa Tusnia Mona (Dhaka, Bangladesh)

Four years ago, I first heard the term IBD. Before that, I had spent years trapped in a cycle of unexplained symptoms and misdiagnoses. Then, one doctor finally said it—a possibility that changed everything. That moment marked the beginning of a long, lone, challenging journey—one that has shaped me in ways I never expected.

Living with Crohn’s disease hasn’t been easy, especially in a society where few understand it. My family had never heard of it. Neighbors mistook it for a simple gastric issue. Friends casually referred to it as an ulcer. Over time, I found myself explaining my condition again and again, trying to make sense of it for both myself and others.

It was during this confusing time that I found comfort in unexpected places.

Chad, Pete Davidson, and the Art of Indifference

I’ve always loved watching Saturday Night Live, especially the Weekend Update and parody commercials. But after my diagnosis, I found myself particularly drawn to one character—Chad, played by Pete Davidson. Chad never reacts to anything with more than a casual “Okay” or “Cool”. His simplicity and indifference fascinated me. Most importantly, it sort of aided me whenever I got tired while explaining my condition or responding to stigmas. Watching Chad made me realize that not every question deserves a long, exhausting answer—sometimes, a simple response was enough. Realistically, it saved my valuable energy.

Then, I discovered something else—Pete Davidson himself has Crohn’s disease. Watching him use comedy to talk about his struggles, even the painful ones, gave me a new perspective. He didn’t let his illness define him. Instead, he turned it into a story—one he could laugh about. That idea stayed with me.

MrBeast, A Semicolon, and a Shift in Perspective

My symptoms flared up in 2019, just as I was stepping into my role as an environmentalist, organizing startup competitions, and representing my university at environmental fests. Suddenly, everything I had been building felt uncertain. It was as if life had placed a semicolon in my path—not a full stop, but a pause, forcing me to adjust. Throughout the rest of my university moments, I was on the verge of dropping out several times.

That’s when I came across MrBeast’s story. I learned, he, too, has Crohn’s. In one of his videos, he shared how he learned to manage his illness by changing his mindset—choosing to focus on what he could do instead of what he couldn’t. That struck a chord with me. I realized that, like him, I could try turning my struggle into a strength. 

Whenever pain came, I tried shifting my focus. Instead of asking, Why me?, I reminded myself that others might be facing even greater hardships like terminal illnesses. At least I am not dying—that was something to be grateful for. To save myself from stress-induced abdominal cramps, the idea acted like armor.

A Win That Came with Questions

This year, for the first time in five years, I received genuinely good news: I was awarded a scholarship to study my dream subject for my master’s. Out of thousands of applicants worldwide, only 100 women were chosen. I was overjoyed.

But when I shared the news, many people responded with an unexpected question: "Don’t they ask for a medical clearance?"

It made me wonder—how many others have felt the weight of these doubts? How many have been made to feel like their dreams should be measured against their diagnosis?

This article is for them.

To those fighting this invisible battle, I want you to know that your struggles do not define your capabilities. The world may doubt you, but that can be freeing. If you succeed, great. If you don’t, they never expected you to anyway. Either way, you win.

As someone fighting such stigmas in everyday life, I know how vital IBD advocacy is! So, a heartfelt thank you to CCYAN for giving me this space to share my journey—and to you, my dear reader, for walking this path with me. Keep going—You’re stronger than you think.

Linked videos:

Chad Horror Movie - SNL © Copyrighted by Saturday Night Live

https://youtu.be/fF6gExZu-2M?si=iW30vRB3rx-B41mG

What is Crohn's Disease????? © Copyrighted by MrBeast

https://youtu.be/pzlPJmNyepA?si=DlMUgnyYB4Gwxh8S

Featured photo by Life Of Pix from Pexels.

Battling an invisible illness while everyone else plays “doctor”

by Beamlak Alebel (Addis Ababa, Ethiopia)

A person with medium tone skin and chin-length black hair stands behind a clear bubble. Their hands are pressed against the glass, as if they want to get out.

Exams are already stressful, but for those of us dealing with invisible illnesses, they can feel like an impossible battle. The pressure to perform, sleepless nights, and depression don't just affect our mind - they also affect our whole body too: and while we struggle through the pain, others think they have all the "expert" answers:

My Brother wonders, "maybe it is some unknown disease science hasn't discovered yet."

My Parents think, "it must be setan (evil spirit), we should take her to holy water."

Society assumes, "it's probably caused by her poor lifestyle or malnutrition."

Meanwhile, I am just trying to survive this exam while everyone else plays doctor.

The silent struggle of invisible illness

Living with IBD means battling symptoms that others can't see. It is a constant storm - worsening digestive system, gut motility issues, poor sleep, and one of the biggest triggers, stress. 

Exam deadlines and academic pressure can make symptoms flare up. But instead of understanding the real impact of stress on chronic illness, people jump to conclusions. They blame supernatural forces, poor diet, or anything except the real medical condition.

Why awareness really matters 

The truth is, many people don't understand invisible illness until they (or someone close to them) are directly affected. This lack of awareness leads to stigma, misdiagnosis, and people suffering in silence. We need more conversations about IBD not just in medical communities, but also in everyday life.

Invisible illnesses like IBD can be incredibly tough. Friends and family should understand that IBD is a serious, life-threatening condition, and many factors outside our control can trigger painful flare-ups. Other people's misconceptions about IBD just add to our stress as patients...so if stress is a known trigger, we need to address these misunderstandings! 

This is why it is important to raise awareness, have discussions, and help others recognize the impact that IBD has on us. 

Because we know invisible illnesses exist, so why do we keep doubting those who live with them?

Instead of playing doctor, maybe it is time we start listening.

(Image from iStock, credit: nadia_bormotova)

Navigating the "Why Me?" Season of Chronic illness

Yeabsira Taye Gurmu: Addis Ababa, Ethiopia

The "Why Me?" season of my journey with Inflammatory Bowel Disease (IBD) was one of the most challenging times in my life. The onset of symptoms—unrelenting abdominal pain, fatigue, and unpredictable bowel movements—left me feeling lost and overwhelmed. Each doctor's appointment felt like a new hurdle, as I faced uncertainty and often dismissed concerns. The emotional weight of confusion, fear, and frustration was heavy, making it difficult to envision a future where I could manage this condition. It was a time filled with questions but few answers, leaving me grappling with the reality of my health.

For new patients experiencing a similar phase, it’s essential to understand that these feelings are normal and part of the diagnostic journey. Expect to encounter a mix of emotions, from denial to anger, as you seek answers. It’s crucial to advocate for yourself and seek support, whether through online communities or professional help. Keeping track of symptoms and preparing questions for your healthcare provider can empower you during appointments, helping to clarify your condition. Remember, this stage is often a tumultuous path toward understanding, and it’s okay to feel vulnerable as you navigate it.

Transforming the "Why Me?" phase into a positive, lifelong attitude is possible. Embrace the challenges as opportunities for growth and self-discovery. Focus on education about your condition, which can demystify the condition and foster a sense of control. Surround yourself with supportive people who uplift you and understand your journey. By practicing self-care and maintaining a proactive mindset, you can turn this difficult chapter into a foundation for resilience and empowerment. Ultimately, this experience can lead to a fulfilling life with your chronic condition, marked by hope and a renewed sense of purpose.

Featured photo by Disha Sheta from Pexels.

Fighting, Grieving, and Enduring Entropy

By Zahraa Chorghay, Montréal

Trigger warning: mental health, death

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In a universe of entropy, living with a chronic illness has meant surrendering control and expectations of stability to give myself the gift of being more flexible and adaptable, and thus, more resilient. This transition isn’t an easy process, particularly for someone like me: an elder daughter of the diaspora fed on a steady diet of validation for professional accomplishments. Unlearning harmful ableist notions of success and well-being has been a challenging journey spanning years — and one that is and will be ongoing throughout my lifespan.

Crafting this last official piece of content as a fellow for this Young Adults Network for people with IBD (inflammatory bowel disease), I am moved to reflect on my transitions, particularly over this past year as a CCYAN Fellow. When I applied to the CCYAN fellowship a little over a year ago, I knew what I was looking for: a space to connect with others like me, and a platform to advocate about IBD. My tenure with CCYAN certainly fulfilled both of the needs, and more. I engaged with IBD research, attended meetings in the broader health policy and scientific community, facilitated peer support meetings, and became part of a community I hope to continue with for many more years. But the joy and learning from being in the CCYAN community was just a fraction of life. 

In reality, 2024 was a year of great turmoil. Geopolitically, yes, and also, personally.

The beginning of my year was marked with illness. By February, after an incredibly fun winter chalet weekend with some of my closest friends, I found myself in the emergency room of a hospital. Diagnosis: severe anemia. Solution: a blood transfusion. (You can read more about that here.)

The following week, I was slated to fly to California for an interview, so I did. That went well enough that a couple of months later, I left my stable corporate job and packed my bags for a permanent move across the continent. After my PhD, I had taken a protracted hiatus from my passion, neuroscience, so I was thrilled to be returning as a postdoctoral associate (“postdoc”) in a brand new lab in the Golden state. 

The move was tough. Moving to a new country means starting from scratch. Logistically, I had to get all my documents in order, deal with banks, find housing with no credit history, and navigate an entirely different healthcare system. Socially, I had to make friends and deal with the profound sense of missing everyone back home. (You can read more about that here.) But I was there to advance my career, and I obstinately held on to that goal. I had to learn many new things, and under a completely different management style than I had previously encountered. So I dove into the scientific literature, asked for help from my supervisor and colleagues, and practiced my techniques. Everytime something went wrong, I came back to the lab, working even longer and harder to make sure I could improve. I would stay late often enough that one of my favourite colleagues became the night-shift janitorial staff member. (She would often pass by me and say, “Keep working hard, girl!”)

Despite my resolve, I struggled. I wasn’t ready to give up, but the combination of suboptimal conditions affected me deeply. I’d return to my sparsely-furnished apartment at the end of each day too exhausted to do anything but eat a quick dinner and lie down, while having that sinking feeling that I had nonetheless missed the mark at work. I was living in a beautiful city with perfect weather and the vast ocean in the peak of summer, but I scarcely had the energy or capacity to enjoy it. My appetite, sleep, and energy levels were all affected, and I knew my stress could cascade into a Crohn’s flare before I knew it. I was taking everything I had unlearned about ableism and notions of success, and learned about IBD, work-life balance, and myself over the last decade, and tossing it out the window.

And as a result, I was drowning. The more I struggled to keep swimming, the more salty water I was intaking. The only times I came up for air were when visitors from home flew to California to spend time with me, showing me glimpses of the person I once was and could be.

Then, I received a text from my father. Inna lillahi wa inna ilayhi raji'un (To God we belong and to Him we return) — a prayer for the deceased. Unable to believe the words that followed, I called him immediately. 

Baji Ammi had passed away.

In English, Baji Ammi translates to Sister Mother, and that is perhaps a better description than the vague, distant, and altogether inadequate word, “aunt,” that the language would otherwise designate. Her death was sudden, as she had been an otherwise active woman in her early sixties. Her death was devastating, as she was the kind of person who gave unconditional love to whomever was so fortunate as to be in her orbit. 

Everything blurred together in the hours and days after this news. Grief became giant convection currents rippling through the mantle, forever shifting the tectonic plates of my life: I was forced to face myself. Ultimately, I quit my postdoc and returned home to Canada. Now, I am trying to figure out what comes next, while dealing with logistics and processing grief.

A year ago, I couldn’t have imagined that I would move across the continent only to move back, or that I’d pursue a postdoc only to leave it within a few months, or that I would never see my kind, beautiful, witty Baji Ammi ever again. And despite the overwhelming grief of dreams and of life extinguishing, I have also been incredibly fortunate (aA) to have unwavering love and support to move through this grief. I’m glad I also had CCYAN throughout this tumultuous year, getting and giving support to our incredible community. 

In a universe of entropy, of constant turmoil and loss, I suppose life endures.

My Journey of Advocacy as an IBD Patient in Africa: A Medical Student's Perspective

By Yeabsira Taye Gurmu, Addis Ababa, Ethiopia

As an IBD patient living in Africa and a medical student preparing to become a doctor, I have come to deeply appreciate the importance of advocacy. Living with a chronic illness can often feel isolating, especially in a context where awareness about conditions like IBD is still developing. Through my own journey, I’ve realized that advocacy is not just about raising awareness; it’s about creating a sense of community and support that can make a significant difference in the lives of those affected by IBD. However, I’ve also learned that it’s crucial to balance this advocacy with my need for personal peace and maintaining my boundaries.

In my efforts to advocate for IBD awareness, I’ve found that it’s essential to be selective about what I share. While my experiences can help others understand the challenges of living with IBD, I’ve recognized that I don’t have to disclose every detail of my journey. Setting clear personal boundaries allows me to engage in advocacy without compromising my emotional well-being. For example, I choose to focus on the broader message of understanding IBD rather than delving into the more painful aspects of my experience. This approach not only protects my mental health but also helps me stay purposeful and impactful in my advocacy work.

I’ve also learned the importance of self-care while engaging in advocacy. It’s vital for me to participate in discussions and support groups at a pace that feels comfortable. Sometimes, this means stepping back and taking time for myself to recharge. I’ve found that when I prioritize my well-being, I can engage more authentically and passionately in my efforts to raise awareness for IBD. Encouraging others to find their own balance has become a priority for me, as advocacy is most effective when it aligns with our personal values and comfort levels.

By sharing my experiences thoughtfully and prioritizing my well-being, I can contribute meaningfully to the conversation around IBD without losing sight of my own needs. As I continue my medical training, I aspire to inspire my peers to embrace the significance of patient-centered advocacy. Each voice is important, and together we can foster a supportive environment that not only raises awareness but also honors the individual experiences of those living with chronic illnesses like IBD.

Featured photo by Steve Johnson on Unsplash.

The Never-Ending Cycle of IBD

By Selan Lee from the United Kingdom

Many things in life are cyclical: the seasons, fashion trends, and the moon’s phases. The one thing we all hope isn’t cyclical is illness. Who wants a never-ending cycle of health and disease? But for those who are chronically ill, it is an unfortunate truth that I previously thought I had accepted - until three months ago.

Three months ago, the symptoms that had started it all returned: frequent diarrhoea, bloating, gas and nausea. In retrospect, stress seems to be a determining factor in my cycle of Crohn’s. My first flare was during the final months of my A-levels - a set of exams that would determine my future according to my 18-year-old self. My second and current flare began two weeks before my graduation and coincided with the final interview for a job I desperately wanted to pass. Unfortunately, the consequences of the stress-inducing circumstances were also cyclical. I severely underperformed in my exams and panic-attacked my way to a re-sit the following year. I didn’t pass the interview and was faced with ending university without a stable job to move on to. Healthwise, like the first flare, I was admitted to the hospital soon after graduation.

Maybe because I had experienced five years of relative good health since my diagnosis, I thought I had accepted the chronic nature of Crohn’s. Despite becoming resistant to a few biologics - I went to university, sourced and worked in a consultancy for my placement year, attended my first concert, joined a panel for young adults with IBD and was able to socialise with friends and family without much concern. My brief period of normalcy had blinded me to the fact I hadn’t really accepted the cyclical nature of my condition, and to be honest, no one with IBD or a chronic illness does.

I remember when someone asked during a panel how people with IBD cope, and the members and I all said hope helped us to cope. Naively, I equated coping with accepting. That’s far from the truth. I can cope with my biologic no longer working as there will be another one. I can cope with waiting for the night shift doctor to prescribe paracetamol for my abdominal pain. I can cope with forgoing foods and situations that will worsen my IBD. But I can’t accept that this will happen again. Understanding and coping are one thing, and acceptance is another.

How can I accept that I will progress through life feeling alone because of my IBD? Like I am sitting on an ice floe floating past all of life’s possibilities. Maybe it is pessimism talking, but living with IBD can be akin to the myth of Sisyphus. Many of us will spend our lives pushing the boulder of IBD to remission - with some, like me, falling back to flare. But maybe, in the words of Albert Camus, I will achieve happiness in this absurd repetition and be satisfied regardless of the outcome. Then again, Captain Raymond Holt says, “Any French philosophy post-Rousseau is essentially a magazine.” [1] - so I will wallow in my pessimism for a while. I might be able to see the brighter perspective of Camus and Terry Jeffords once my new meds prove to be successful.

References

1. “Brooklyn Nine-Nine” Trying (TV Episode 2020) - IMDB. (n.d.). IMDb. https://www.imdb.com/title/tt10322288/characters/nm0187719

Featured photo by Frank Cone from Pexels.

The Art of Living in the Moment: A Personal Reflection on Life with Crohn's Disease

By Yeabsira Taye Gurmu, Addis Ababa, Ethiopia

Living with Crohn's disease has been a journey filled with ups and downs, but one of the most valuable lessons I’ve learned is the art of living in the moment. Early on, I was consumed by worries about my symptoms and the unpredictability of my condition. I often found myself dreading social events, fearing a flare-up would ruin my plans.

In the midst of pain or fatigue, I remind myself to pause and focus on the here and now. Simple practices like deep breathing or taking a mindful walk in nature help ground me, allowing me to appreciate the beauty around me. Each moment—whether it’s a warm cup of coffee, a shared laugh with a friend— becomes an opportunity to connect with life, rather than merely endure it.

Flexibility is key. Plans may change, but spontaneity can lead to unexpected joy. Embracing these moments, whether it’s a last-minute outing or simply enjoying a quiet afternoon, reminds me that life is happening now, not just in the future I fear.

Building supportive relationships has been essential. Sharing my journey with understanding friends and connecting with others who have IBD fosters a sense of belonging and comfort. These connections remind me that I’m not alone and that it’s okay to lean on others when I need support.

Ultimately, living in the moment while navigating IBD is about finding peace amid uncertainty. It’s about celebrating small victories, practicing gratitude, and recognizing that even in the struggle, there is beauty to be found. Each day is a new opportunity to live fully, savoring the present despite the challenges that come with chronic illness.

Featured photo Sergey Guk from Pexels.

Why Finding Your People Matters

By Maria Rouse, N.C., USA

It took me nearly 15 years to begin finding community as someone with inflammatory bowel disease. It was a very lonely 15 years. 

I try not to be so hard on myself, since I was first diagnosed with IBD when I was 10. There is not much in the way of accessible peer support for youth with IBD, especially at that young of an age. It was not an option I ever realized could be possible through my health system, and social media as a platform for peer support was just beginning at that time.  

My inability to find community led to a false perception of singular failure. I was the only person my age that I knew with IBD, and consequently internalized ableism spread malignantly within my mind and began marring my conception of myself. 

With the stigma associated with IBD, it is also not something you typically share about yourself with other kids on the playground, or even when you’re getting to know people during orientation at college. I have met several friends that I only much later learned had IBD. 

Ableism is a key motivating force in keeping us silent from sharing our stories and lived experience with others. Ableism is part and parcel of patriarchy, colonialism, racism, sexism, or most of the negative isms that still permeate society. It encourages us to remain alone in our journeys as chronically ill people. 

In a system that often tries to force us to act individualistically and hide our unique qualities for the sake of its imposed and exalted definition of success, building disability community is a light in the darkness. It is in itself an act of resistance and radical vulnerability in a society aims to police abnormality and difference. This can make us believe that our challenges and needs are uniquely too much, when nothing could be further from the truth.  Community reminds us of our humanity as chronically ill people. 

In any setting, making new connections and friends can be terrifying, particularly if you have felt so alone and different all your life as a person with a chronic illness. It can feel especially vulnerable to join a support group discussing such sensitive topics as disordered eating and body image with a whole new groups of people. But forming community through a group such as CCYAN is so worth any initial awkwardness or difficult topics. 

The reality is that peer support is not just about you, although it often is cathartic and restorative to know we are not alone and to learn how others managed the difficulties that IBD created in their lives. Peer support is also an act of advocacy, allowing disabled and/or chronically people to take up space when so often our voices are not heard. Building community is an act of advocacy for yourself and also others who may still face barriers in sharing their experiences. 

In short, don’t wait years to engage with peers who have IBD. Make time for that peer support group meeting, attend that advocacy event, or connect with peers over Instagram. There are typically more obstacles for chronically ill people to engage with peers, whether that is being immunocompromised or having limited spoons or energy. However, engaging with other IBDers in whatever format is accessible to you is well worth the effort. Life is truly all about connections, and the ones you make with those who have very similar experiences as you can be some of the strongest bonds you will experience. You never know what can come out of it, and how the world could be changed for the better. 

Featured photo by Darrel Und from Pexels.

Cathartic Crohn's: A Patient’s Reflection on Stickman - The Vicissitudes of Crohn's by Artist Spooky Pooka

By Peter Park, TX, USA

The experience of extreme abdominal pain that feels, quite literally, gut-wrenching and it comes the debate in my head: Should I go to the hospital or not? In peristaltic waves, I wonder “Can I just bear thru it? I really dont want to go to the hospital.” It’s not just a hospital stay. It’s taking time off work. It’s bothering family to transport and take care of me at 26 years old. It’s wondering when I’ll ever be normal again. These thoughts and feelings are no stranger to me when I experience an abdominal flare, and I am sure it may sound familiar to you as well. Perhaps artistic expression can capture some of the emotions and thoughts we experience in our time of distress. 

Spooky Pooka is a professional illustrator and artist from Brighton, England and a Crohn’s patient and captures his view of Crohn’s disease through this piece. I encourage you to read through his poems and artistic pieces. Of his amazing work, I want to highlight a few pieces that stood out to me:

From the section, Quod Me Nutrit Me Destruit “What Nourishes Me Also Destroys Me”

“A blind conspiracy of T-cells

A dissonance within, a mute fluttering

The dolorous baying of ravenous entrails

The moxi drawn from reticulated limbs

And the world shudders down under black wings

To void all memory

To disgorge all resonance

To vomit all in exegesis of viscera”

Without having spoken to the artist myself, I will not attempt to predict what he was thinking. So, I will speak to share why I found this so fascinating as a medical student who suffers from Crohn’s Disease. The “blind conspiracy of T-cells” is exactly how autoimmune disease behaves. In normal function, T-cells use markers on cells to identify what’s our body marker vs a foreign body marker (which has to be eliminated). In autoimmune disease, that self body marker can be confused with a foreign body marker and cause T-cells to attack normal healthy tissue. In IBD, this happens within the GI tract. A “blind conspiracy” leads me to believe that T-cells act on their own accord, led by misleading signals, and hypervigilant to any suspicious activity. 

Words like “dissonance within”, “to void all memory”, “disgorge all resonance”, “vomit all in exegesis of viscera” describes a state of body that is so critical of itself, ready to eliminate any imperfection or any disconnection from the true self that it destroys the entire body. It reads as if the T-cell is a delirious warrior who once was a hero of sorts in his right. But now, this T-cell warrior has lost his way, driven mad by his rage, and killing his own people in frenzy. 

The piece captures the human skeleton with a deer skull and antlers kneeling while holding its belly as old weeds spill out. The background shows perhaps floating T-cells with human eyes. It captures the visceral pain of an abdominal flare - a posture I personify with too easily. It also captures the despair against the T-cells in their march for self-destruction. It seems nothing can escape itself. 

Despite this grave depiction, Spooky Pooka ends the graphic series with a final poem that implies a sense of hope. In the section Dolor Hic Tibi Proderit Olim “Some Day This Pain will be Useful to You”, it is the ending lines I reread over again.

“The tree’s womb may regurgitate old souls

If only for one moment…

It may grow flesh like life”

I’m not sure what it means. I’m not sure why it fascinates me. Perhaps I am desperate to find meaning and purpose behind my suffering. That my abdominal pain will somehow manifest as strength in my nearly malnourished body. Or that my constant fatigue and uncontrolled bathroom breaks is somehow a sign of strength. During my hospitalizations, when I was most alone, I would think that “maybe suffering is just pointless suffering.” 

But this poem and the picture behind it gives me hope. Like branches of a tree, my suffering can extend out and reach out towards others. To grow from untreated soil and serve others who will walk the same path. A hand to hold in suffering together. 

Featured photo by Soonam Wooeser from Pexels.

Check out the inspiration for this post on Spooky Pooka’s website.