Whispers of the Halved Sock

By Tanisha Singh

In the realm of weariness, whispers awaken,

Chronic illness casting shadows deep and long,

A tale unfurls, a fragile sock forsaken,

Symbolizing battles where strength and fatigue belong.

Within this narrative, a half-formed knit,

Emblem of resilience, fragmented yet bold,

A journey unfolds, where energy is split,

And the load of life becomes a tale untold.

Amidst the clamor of the spinning machine,

That demands full loads, brimming with might,

Weary hands falter, their strength unseen,

Half a bunch of laundry, their solace and light.

Each garment carries dreams, woven thread by thread,

Yet fatigue, a cloak that masks aspirations anew,

But in the midst of weariness, courage is bred,

Half a sock embodies the strength to push through.

Let the washer’s hum become a lullaby sweet,

Soothing weariness with a gentle embrace,

In each unfinished task, resilience finds its beat,

The laundry of life, forever incomplete, yet filled with grace.

Within the whispers of the halved sock, we find,

A story of adaptation, acceptance, and might,

Yet hidden beneath, a struggle undefined,

To navigate the maze of each arduous fight.

For in the midst of weariness, everyday tasks fade,

Drained of their colors, their vigor, their cheer,

A constant battle waged, where strength is frayed,

And simple acts become mountains, daunting and sheer.

The load of life’s laundry, a heavy burden to bear,

When anemia’s grasp weakens every step,

Each task, a mountainous climb, a weary affair,

Yet resilience blossoms, refusing to accept defeat.

So let this tale of the halved sock convey,

The silent struggle within the mundane and routine,

A reminder that each day is fought in its own way,

And the smallest victories shimmer, radiant and serene.

In the whispers of the halved sock, we find,

A testament to courage amidst the haze,

A plea for empathy, for patience, and kind,

As we navigate the labyrinth of challenging days.

May this poem serve as a reflection of your journey and a source of solace and understanding.

Featured photo grayscale clothes hanging on cable by Jose Antonio Gallego Vázquez from UnSplash.

Surgery: A First Person Account

By Mahder Ayalew Bezabih

The experience of undergoing surgery can be a daunting and overwhelming one, particularly when it comes unexpectedly. This is certainly true when it comes to my experience. I found myself facing surgery for a partial small bowel obstruction and ileocecal intussusception after undergoing a colonoscopy. Although we worked hard with my doctor to avoid the need for surgery by changing my diet and medication, I ultimately found myself needing to take this drastic step.

Going into the surgery, I was understandably fraught with a range of emotions. I felt like a failure for not having followed my diet properly and blamed myself for the situation that I now found myself in. I struggled greatly in the month leading up to the surgery to present a strong face to my family, even as I cried alone and struggled to come to terms with what was happening.

Despite this, I was able to take some solace in the knowledge that I was receiving the very best care available. I was treated by a team of skilled and compassionate surgeons and nurses who were supportive every step of the way. Even during the moments leading up to the operation, I was able to remain calm and focused, making jokes to ease the tension in the room.

I was unconscious during the surgery itself. However, I was able to piece together some details afterwards from the operation room note. I received resection and anastomosis via laparoscopic surgery, which took a total of three hours.

After the surgery was completed, I struggled with a range of physical and emotional challenges. I needed to sleep but woke frequently and suffered from bouts of vomiting. In the middle of the night, I found that I was unable to cope with the discomfort any longer and reached out to the nursing staff for support.

I have improved with medication, day by day as the pain goes away. The wound has healed. I am eating well—over time, not the day after surgery of course. Now one month after surgery, I am mentally and physically well and able to return to work.

All in all, my experience serves as a powerful reminder of the importance of persistence and resilience in the face of medical challenges. Although the road to recovery may be long and difficult, with the right support and care it is possible to emerge from even the most daunting situations stronger and more resilient.

Featured photo by Karolina Grabowski from Pexels.

Eros and Thanatos

By Tanisha Singh

Content warning: discussion of suicidality and mentions of disordered eating'

For mental health resources, see IBD Patient Support Foundation India

Maslow’s theory of motivation, originally conceived by psychologist Abraham Maslow as the “Hierarchy of Needs” in 1956, states that there are certain human needs which, depending on their order in the hierarchy, elicit a proportionate motivational response from an individual. In short, meaning that certain physiological needs such as food, water, air, safety, love and belongingness need to be fulfilled before one can find the motivation to pursue growth needs such as self-actualization. When you are chronically ill, you find yourself battling at the lower levels of this hierarchy before you can gather the energy, motivation or well-being needed to pursue self-actualization—if at all. At least for me, it’s been a challenge to overcome the fatigue, the tiredness, the anxiety, the hunger that comes with my disease, so much so that there was a professional degree I wanted to pursue in the past and now I had to renegotiate my goals to settle for a less intensive course instead given my ability to manage my chronic disease.

All of this struggle has greatly affected my self-esteem. I feel disabled and lacking in ability, especially in how I lack the energy to do all the things someone my age would usually be able to do. A part of it is based on my perspective on having fallen sick, which may not be the most resilient of all ways to view such a thing. I am sure there are people who don’t view this as such a major setback the way I do. But the thing is that I simply do feel this way, no matter what I tell myself. I try daily to cultivate a more optimistic outlook—and I really do try very hard—but with fleeting moments of strength, I wind up mostly with despair and dejection. Perhaps this is because even before the illness, I struggled with my mental health. I didn’t have an easy childhood. I spend most of my days today as I did then, in isolation, devoid of familial nourishment. As a result, I run out of the emotional and physical nutrients with very little left to pursue “growth.” I was suicidal before the illness and struggle even more so now. The pain and hunger affect me every day—not to mention, for example, the dizziness of anemia. It’s important to mention here that this may not be indicative of a general experience of every patient, but is just reflective of my experience. Despite medications and care, I struggle with a lot of pain, discomfort, and several other contingent health issues that have compelled me to follow a very limited diet, hence the hunger (and my disordered eating history). 

So, this time around when I decided to end it all given the quality of my life, I really decided to end it. It was unlike all the other times because I really finally decided to do it this time. And I was simply counting down to the day I was going to do it. And in the waiting period I discovered a latent wish to live that had never surfaced before. The death wish was the only psychic motivation that echoed in my head all my life: the only thing I was most motivated towards. But this time around it was different, because the death sentence became very real. It was going to happen, I was going to end it all. And as I grew closer and closer to the decided day, I had this really trivial but strangely profound thought. I said, in my head, “But I have not listened to all the music I wanted to listen to. And I really feel like re-watching Modern Family again. Oh! And how much I want to lose myself to dance! I am going to miss that! And these two friends of mine that I have been talking to lately in my last days, Ziggy and Mo, I want to talk more with them. Talk and talk and talk, halfway to dusk, while music soothes my nerves and gently puts me to a restful sleep. And ideally I would wake up to a breakfast of aloo paratha and chai.” Well unfortunately the alloo parathas won’t happen (☹), but I stayed for the music, for the dancing, for laughing with friends, and for the love of art.  

These desires make sense if you knew that I always wanted to be an actor/dancer growing up and just when I moved to Mumbai to pursue my dreams, this disease happened and things have never been the same. I still push myself to go to dance class though, even though I am struggling to have enough energy to keep up, and the dizzies that I told you about! They won’t let me progress as fast as the others, if I am going to have to drop down on my knees every 10 minutes in the choreography! And so “growth” will have to be subjectively defined. It may not look like the capitalism-fueled modern day “growth,” but choosing and finding meaning in seemingly trivial things like music, art, movies, dancing, talking to friends may just be growth needed for a chronically sad girl who chooses to live despite the pain and the disease.

Being on the edge of dying made me want to live. For the small things. For the music, for the art, for the dancing, and for the friends! Mo and Ziggy perhaps acted as a buffer between me and the death wish, giving me enough time and mental stability to arrive upon the wish for life. Eros and Thanatos as psychoanalyst Sigmund Freud would say. The two major drives/instincts that grip our psyches, meaning that the battle to choose death or life is a perpetual reality for each one of us. Sometimes maybe we need to truly choose life and the stuff of life, the experiencing of the sensory, the real and the immediate, as opposed to the ethereal ideas of success and achievement that touch us only fleetingly and from a distance. Perhaps suicidality can allow one to assert and regain a sense of control over circumstances they can’t control—from that point of choice one chooses life again! For now, that is me, and I still struggle daily with suicidality, the pain, the hunger, the sadness, the isolation, but I am glad to have arrived upon at least a list of things I could live for. And the thing about it is that the list continues to grow. Besides the music, art, dance, and friends, (and psychoanalysis as is quite evident) I also want to live to see my clients (as a therapist myself) truly thrive. Maybe all these deeply existential struggles can be used to help others navigate through these tough existential themes of living. What it tells me is that meaning has to be made, and has to be given to life which is personal to us. 

Cheers to the trivial but significant stuff of life that make one choose it—every day!

Featured photo Eros Y Thanatos by Nath Planas from Wikimedia Commons.

A Patient’s Agency: Taking Action Through Nutrition

By Divya Mehrish

The past two decades have witnessed a significant rise in reported IBD cases amongst American adults, which has now hit around 2.2 million (1). In parallel with this rise, the number of studies examining the influence of diet on IBD symptoms has increased. But diet is such a personal phenomenon that uniquely affects all people, especially IBD patients, and is thus a complex issue to investigate scientifically. For example, some patients find that eliminating gluten, processed food, or dairy helps relieve pain or gastrointestinal discomfort. But most of us identify these foods by trial and error, trying to figure out what might be a trigger and what might soothe and nourish our gastrointestinal tracts. However, nutrition is not a game to be played.

Who can most effectively target the kinds of foods that are most nourishing and easy to tolerate for a sufferer of IBD? The patient. I believe there currently exists a significant hole in the current dialogue around the relationship between nutrition and the manifestation of IBD symptoms. The missing voice in this dialogue belongs to the patient.

Given that IBD is a complex condition that impacts every individual differently, we, as patients, represent primary sources who can give voice to the nuances of our diseases and collaborate with our providers to identify potential treatments for our particular cases. We are a uniquely powerful lens into IBD.

In my own hospitalization, I felt as though my nutrition-focused questions were not given the time they deserved. To streamline the treatment process for a particular patient, doctors should take into consideration the specific health journey, lifestyle, symptoms, questions, perspectives, and goals their patient communicates to offer more individualized medical recommendations and therapies, thereby actively shifting the current patient-provider dynamic.

While there are many essential elements of the patient-provider dynamic to reflect on, I am focusing on the great potential for collaboration, particularly on the patient’s side, in nutrition—a critical element of IBD recovery given that this condition manifests in the GI tract and can directly interfere with an individual’s digestion and nutrient absorption.

If your provider does not open the space for conversations centered around nutrition, you can take the initiative to be curious, ask questions, and direct the discussion in a way that will make the space most meaningful to you and your case. In my personal experience, I found online forums to be particularly helpful. In the seven years since my diagnosis, I have noticed a steady increase in the number and variety of IBD-specific community forums available. The most active of these online support programs are run and monitored by major organizations such as the Crohn’s & Colitis Foundation, which allows patients (whose diagnoses must be confirmed through a registration process before permission to post is granted) to exchange advice and personal experiences. Many patients use these platforms to seek out empathy directly from other patients. The existence of and patient reliance on these rich discussion hubs suggests that patients take advantage of these forums to engage in meaningful conversations, especially around the relationship between nutrition and IBD flare-ups.

To fight my own battle against IBD, I have been forced to recognize that my body is not, in fact, the enemy, but an entity I need to cooperate with and nourish. While nutrition is just one answer to the multidimensional puzzle that is IBD, we, as patients, exist in a tremendously vulnerable and powerless place when gravely ill, and often want to feel as though we can take action over our health and can make intentional changes in our routines to improve our symptoms. Through using knowledge, ideas, and inspiration gleaned from online patient forums as a foundation to transform the conversations that take place in the doctor’s office, I believe us patients can more clearly offer our providers the full story of how our illnesses impact all realms of our health—physical, personal, social, mental, and emotional. We are so much more than chronic illnesses—not “problems” that need fixing but instead beautiful, multifaceted entities on our own journeys to full health.

(1): “Inflammatory Bowel Disease: Data and Statistics,” Centers for Disease Control and Prevention (Centers for Disease Control and Prevention, November 9, 2021), http://www.cdc.gov/ibd/data-statistics.htm.

Featured photo by Pixabay from Pexels.

This is the body I have today.

By Laurel Dorr

cw: Body Image

When I was diagnosed with Crohn’s, I wasn’t prepared for all the ways it would change my relationship to my body. In particular, I didn’t know how it would affect my body image. When I was at my sickest, I dropped to my lowest weight since I was a teenager. As soon as I was diagnosed and started my first course of steroids, I lost about thirty pounds in as many days. I was getting sicker when I should have gotten better. Everyone seemed surprised that I was losing weight on prednisone. My weight stayed down for several months. I complained about it being a constant reminder of how unwell I was or how strange this new body felt. But beneath that, I was also relieved.

I didn’t have a very body-positive perspective to begin with, and I had struggled with my weight for years. Finally, the number on the scale had started to budge. Once I started to stabilize on my second biologic, I took my renewed appetite as a positive sign that my condition was improving… until my weight started to creep back up. And up. And up. Of course, I knew that I needed to eat more than a couple pieces of toast a day to get well. After more than a dozen iron infusions, I knew that I needed more nutrients to keep my anemia at bay. I knew this fuel was even clearing away my brain fog. However, I was also acutely aware of how differently my clothes fit. How the large-frame glasses I’d bought a year before looked goofily small on my steroid-swollen face. I made adjustments, with increasing frequency, to Zoom camera angles and selfies, trying to look more like my old self, and I avoided looking at pictures of myself on social media.

After being on prednisone for almost a year straight, I gained more than double the weight I’d lost at the beginning. Prednisone made me feel terrible in a lot of ways, but the way it altered my body image was the worst. Finally, I was put on a medication that allowed me to wean off—and for awhile, stay off—steroids. All of the not-myself-ness I’d been feeling melted away, almost immediately. My appetite became more manageable, and I had the energy to treat my body in healthier ways—better sleep, more movement. It didn’t happen overnight, but my body slowly began to feel more like it used to.

That doesn’t mean things are back to “normal,” whatever that means. Even if my weight continues to go down, my body simply isn’t the same. I described the extremes of my weight changes, but the reality is that it still fluctuates back and forth, as medication doses and other factors shift over time. I’m coming off yet another prednisone course now, and it might not be the last time I need it. Even if it is, weight fluctuations aren’t unusual, especially with Crohn’s disease—at least for now, these changes are relatively normal for me.

After all those months struggling with my body image, I’ve become more accepting of these changes, the inevitability of them. Some of it is out of my control, some of it isn’t; but none of it is a punishment. More importantly, I just don’t think about my body image as much anymore. This is the body I have today. Some days, it’s that simple. There are things I like about it, and things I don’t. Some days, those things change, or are more noticeable. But I’ve learned to look at it with less judgment. I buy new clothes when I need to, instead of squeezing into pieces I’m not comfortable in. I don’t avoid taking pictures with my friends, and I don’t cringe when I see unflattering angles of myself. Some days, I’m better at taking care of my body than others; but I also recognize that my weight is not a direct reflection of how “healthy” or “fit” I am at any given time. I’m allowed to live in this body, whatever it looks like. I deserve to enjoy this body. Right now, that’s enough.

De-Stressing to Your Best with IBD

By Linda Yoo

Early in my IBD journey, I noticed a relationship between high stress and worsening IBD symptoms. Thus, I worked to de-stress and find new hobbies. My efforts backfired as I got more stressed from trying to de-stress which defeated the point. I joined new groups and created hobbies that ended up feeling like a chore, not sparking joy, and leading to frustration. To not fall into this pit hole again, I began intentionally choosing my de-stressing activities.

For the most part, I have come up with some rules I follow, which are de-stressing activities:

-       do not push me to a breaking point

-       do not diverge from my usual routines and habits

-       do not require keeping a score or ending up with a win/loss

-       can result in a product (e.g., a painting, vase) but there is no expectation of a product or to be productive

-       can be left at any time without consequences or guilt

These activities require little effort, are flexible, and some can be altered to accommodate even my worst IBD days. I do not choose activities that require absolute commitment (e.g., scheduled classes) or do not have a bathroom nearby. These two items were my biggest problems when choosing activities. I found it at times difficult to share with strangers my dynamic disability when I missed a class or had to leave early. Additionally, not having access to a bathroom is very difficult for me, even in remission. I gravitate toward going to places that have bathrooms for peace of mind.

Some of my favorite de-stressing activities are:

-       Take a bath with a bath bomb

-       Sit at a coffee shop and people-watch.

-       Go to the library and look at the art on the front covers of books

-       Walk into a craft store/furniture store/home decor store/mall and get lost

-       Listen to a podcast on a new topic

-       Take a towel, lay it on the grass, and deep breathe

It is important to note that exercise can be a great de-stressing activity! I think it can be fun to diversify activities and have options for low-energy days as well. Choosing an activity on my list can feel a bit spontaneous and exciting, and I like to keep a list of activities with me on my phone. The most important part of my de-stressing activities is that they do not have an end goal, a predetermined outcome, or an expectation of being productive. To fully enjoy the moment and the activity, I need to be completely fine with it taking up space and time without worrying about any outcomes. I try to complete a few activities per week and deliberately make room in my schedule for de-stressing. If I do not plan the time I need for these activities, they get put on the back burner and I end up feeling burnt out. De-stressing activities are key to keeping my IBD in remission and boosting my mental health!

Featured photo by Taryn Elliot from Pexels.

Making the Most of Your Internship: How to Navigate Travel with Inflammatory Bowel Disease

By Karen Mancera

Imagine this: you've just landed in a new city, ready to start your dream internship. For many college students, traveling for an internship is an exciting opportunity to gain new skills, network with professionals, and explore a new city. But for those with inflammatory bowel disease (IBD), the thought of traveling to an unfamiliar place can be daunting and also presents unique challenges.

Thankfully, with the right preparation and planning, it's possible to manage your symptoms and make the most of your experience.

Planning ahead and preparing for the trip can begin as soon as you decide to begin applying for internships. I remember when I was contemplating whether or not to accept a research internship after my diagnosis. I felt overwhelmed and afraid about the uncertainty on how I would manage my health while I was away. Because I had just been diagnosed a few months prior, I didn’t have an established treatment yet which made me even more nervous about the process. Like in most Hispanic families, my parents were also hesitant about me going across the country for several months by myself. I still remember my mom’s main concern, ‘¿Y si te pasa algo y estamos aquí tan lejos?’ (What if something happens to you and we are here so far away). 

After overcoming the initial fears and concerns about managing your health while away for an internship, it's important to take practical steps to ensure that your health needs are still being met.

Connect with your healthcare team.

I discussed my plans to travel with my gastroenterologist and he gave me useful information to move forward. He assured me that I could still pick up my prescriptions in a different state as long as I informed them which pharmacy was closest to me. I chose to use the same pharmacy company I was using at home so my information was already in their system and picking up my prescriptions was quick. I was also able to schedule a virtual appointment with him while I was away. Keep in mind the time zone you will be in when requesting an appointment, or you might accidentally schedule one at 6 am like me. 

Communicate and advocate for yourself while navigating your internship.

You could share your diagnosis or simply some of your challenges that pertain to your role with your supervisor if you feel comfortable. Otherwise, you can discuss these details with the human resources office or research program coordinator. This can ensure that you receive the accommodations that you need. For example, for me this meant that the research coordinator prioritized finding 4-bedroom apartments with two bathrooms instead of one. She also took care of dietary needs for program-sponsored meals. 

Maintain your self-care during your time away.

There were times when other students in my program planned to explore the city and I opted to stay back because I was not feeling well. I also tried to prioritize my diet by cooking my meals most of the time. Cooking can be tricky because you will need to get cookware if you don’t bring it with you. My roommates and I decided to purchase some of the basics and shared them. Shopping for groceries can also be challenging if you don’t have transportation, but look for alternatives in the area like store deliveries, public transportation, ridesharing options, and local stores. Another priority for me was exercise. Since my research internship was affiliated with a university, I had access to their recreational facilities, but you could find local gyms or safe areas to go for a walk.

Stay positive.

Remember that having IBD doesn't have to hold you back from achieving your career goals. With the right planning and preparation, you can successfully complete your internship and gain valuable experience for your future career.

Libidinal Energy of an Emotional Eater with Colitis

By Tanisha Singh

Photo: Olga Kuraeva

In psychoanalysis, an area of great interest for me, the term ‘libido’ is used to describe the vital impulse/force or energy that directs all our action in a way. It is commonly misunderstood to refer to only a sexual instinct whereas it extends to basially every possible instinct we have, whether it is sleeping, waking up, eating food, working out, talking, working or not working, you name it. The reason we are able to function or operate and engage with our world at all is because there is a libidinal investment in things that propels us. To put it simply, desire for things helps us seek those, wakes us up in the morning, and gives meaning and purpose to our existence, and I would argue also a sense of direction in an otherwise whirlwind of impulses - both internal and external. 

Growing up in a dysfunctional home turned me into an emotional eater. I would seek a lot of comfort in my chai and biscuit every evening. It soothed my nerves, eased my anxiety of being in a highly conflictual home. The sugar in the cookie gave me small bursts of happy hormones that were lacking through the day from being in an unhappy home. I don’t know if it was the depression or something else, but getting out of bed in the morning is a herculean task for me, from as far back as I can remember. The libidinal investment I had in food helped me out-do many anxious thoughts and feelings that would flood me upon waking up, lay on me like a weighted blanket, and help me get out of bed. I would bait myself out of bed saying, “Well, at least wake up for a soothing cup of chai and biscuits and the foods to follow.”

On being diagnosed with UC, and then understanding the role that diet plays in flare ups, I had to bring my emotional eating in control. My diet was pretty balanced and I wasn’t overeating or eating only processed unhealthy food. I enjoyed a nice home cooked meal just as much, and I enjoyed working out among other things. It was the occasional dessert that I used to self medicate from the existential pain that lives with me. I would argue it was a healthier (if not the healthiest) form of coping than drugs, or alcohol, that I could see myself being vulnerable to, given my mental health challenges. And so to have that taken away, especially because I manage my symptoms primarily through diet and herbal medicine, was crippling. (*A tiny caveat here would be to follow your doctor’s advice above all.)

I was crippled severely with anxiety and depressive feelings that I didn’t have my medicine for anymore. It took years for me to be able to develop another system of coping. And I, as a mental health practitioner, do believe that each needs to find their own way of a positive sort of coping, because life is crippling as it is. And to have a chronic illness affects not just the body but the mind, as the two are not separate. It affects your entire being. 

And so I started to look for other forms of libidinal investments that I could make that would propel me forward in life, help me keep going and most importantly be able to wake up in the mornings. And such is the beauty and the complexity of the human psyche that it is full of multiple impulses shooting within us at all times, enticing us towards several different things. Desire! Such a wonderful source of energy if gathered in the right way! And so I focused on other aspects of my desire, other than food. An instinct just as powerful, for which we can go empty stomached for hours, gripped totally by the magic of artistic pursuit. There came dancing! It saved me. I decided to take it up seriously. Like really get into the nuances of this artform. And that became a propeller for me to wake up and continue living. All this frustrated libidinal energy around food that wasn’t finding its resolution was now being directed towards dancing, psychoanalysis, music, my love for relational equations (friendships, the romance within it), my pet rabbit, my work as a therapist, my love for clothes! I found plenty that emerged from the creative impulses within my psyche that are equally as pressing as our desire for food, water, or air. 

It was my learning that the human psyche, the body-mind, is layered, and multifaceted, and so when life damaged one or more aspects of it, whether it is one’s health, or finances, or relational grief, there is always more within the psyche that is still bubbling for expression, for experience. And we can ooze with life still using those psychic impulses, the creative juices that continue to flow as you go through the trials and tribulations of the human existence. So rage till the dying of the light. May you find several libidinal investments to make that create a structure for positive coping for you.

“Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light.”

— Dylan Thomas - 1914-1953

Cover photo by Kourosh Qaffari from Pexels

​​her name is Anemia

By Divya Mehrish

The body is a vessel of ignominy—

words curl in my stomach like the roots 

of baobabs. The body is like the bosom

of earth—a landscape of blood-red 

summers and dented moons and carnivorous

flowers; a seasonal clock programmed

to blossom into April rainstorms and shed

its scales like a snake when autumn wind tickles

its throat; a seasonal clock programmed to hibernate

in the dead of winter. So, when my veins fade

below the surface of my skin and my fingertips

turn icy-blue and the world spins around my scalp

when I stand up too quickly as if my neck

itself were celestial enough to trace out its orbit, 

I wonder if my body is simply going to sleep. 

Perhaps I am a tree—destined to pine away

with the December wind just to be born again

alongside the darling buds of May. In this cycle

of rhythmic naptime, I have discovered that health

is as fleeting as a zephyr—I must catch it between

clenched teeth while I still can. I have discovered

illness is like rainfall—there is beauty in surrendering

to the sky and its tears and becoming one

with the earth, with the body. My rain is crystal

clear and gentle as moonshine yet saturated

with the desperate need to cling to me, to claim

what belongs in the tunnels of my capillaries. My rain—

her name is Anemia. But she has brought me closer

to myself, to my body, to this earth—this earth

that is like a wound we keep scratching, infiltrating,

hungry to know its limits. The way rain in eyes

become tears, become teardrops, become raindrops,

I keep falling and opening and reopening and leaking,

blood seeping out of my body through the shaft of my colon,

emptying out of the ewer of my inflamed intestines—

I am capable of flooding this earth with my very being.

But now I am here: standing in the rain with eyes wide

open, arms open to the sky, inhaling the deluge

and waiting for spring.

What I learned from being an IBD Camp Nurse

By Linda Yoo

I decided I wanted to be a nurse in high school after experiencing the compassionate care of the nurses who took care of me while I was suffering my first IBD flare-up. As graduate school started to get tougher, I started to ponder on my “why” in life to grasp some motivation and excitement for the future. I was reminded of all the reasons I wanted to become a nurse, one of which was to impact the real lives of those with IBD through my talents and skills. Thus, during the summer of 2022, I decided to volunteer as a camp nurse at an IBD camp for children. Being a nurse with IBD taking care of children with IBD was an eye-opening experience, and the summer of 2022 was one I will never forget.

I was diagnosed with IBD in high school, and I remember how desperately I wanted to be “normal,” after my diagnosis. In some ways, I was in denial I had a chronic disease that required self-management. I was disinterested in learning about IBD and wanted to escape from the reality. Rather than trying to find ways to improve my symptoms or prevent flare-ups, I worked to hide the fact that I had an illness and was paranoid that others would find out. Looking back, it is almost laughable to think about the energy and time I spent hiding my IBD from others. But even to this day, I struggle with being open and light-hearted about my IBD. It has taken a long time to settle into my new “normal,” and share my experiences with strangers.

At camp, it was “normal” to have IBD.  At camp, taking medications was “normal,” needing a break during activity was “normal,” and going to the bathroom was “normal.” During camp, I thought to myself, if I had these kinds of experiences as a kid, then may I would not have struggled so much trying to be “normal.” If I had seen the lives of others with IBD as a high schooler and seen others be open about their disease, maybe it would not be so difficult to share my story. I was so grateful that there is a safe place for children with IBD to be their full selves and not have to explain their IBD. Not only was camp filled with so much joy and laughter, but also so much understanding, love, and kindness. This past year, I look back at the memories I made at camp and cannot help but smile. The campers took care of each other, and me. They reminded me of their routines and regimes when it came to their medications and spent time with me to keep me company. As I watched them play, run, and have fun, I was able to see the importance of having a camp dedicated to children with IBD. The experience at camp last summer was part of my healing journey- a step closer to finding strength and joy in IBD.