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  • We Need More

    There is nothing I want more than to bury my head under my covers, close my eyes, count to ten, and wait until the storm is over like I did when I was 3. But I’m not 3 anymore and the monsters don’t hide under my bed or reside in the confines of dystopian novels. They stand at a podium and spew hatred in the name of patriotism. 

    I woke up this morning to the sound of my mom in the kitchen and knew from the heaviness of her sighs that we did not take a step forward, but 10 steps back. I waited for a wave of emotion to wash over and drown me but it didn’t. I expected to feel the way I did after the 2016 election but I didn’t. I did not grieve my innocence nor lick my wounds. I simply felt the tears fall and laid back down. 

    I let the tears come when they wanted and focused on my tasks until my younger sister came down the steps. In her face and her broken voice, I saw and heard the cry of the youth who are watching people cheer for a future they don’t feel safe in. I saw in her face, myself in 2016, begging for answers from adults who were meant to protect us. Why is hatred, racism, and sexism not a deal breaker? How could you vote for this? 

    My sister, who rarely cries, breaking down and asking these questions ignited a fire in my bones. I no longer feel passive, tired, or hurt. I feel motivated, angry, and strong. 

    I am a Mexican-Peruvian bisexual woman with a permanent catheter and a chronic bladder condition. Today I will grieve with my communities who are scared of what is to come. I am scared too. I will hold their hands and tears with the care that they hold mine and tomorrow, I will ensure I stand taller than the small minded people who support someone like him. I have not backed down yet and I certainly will not now. There is too much at stake. 

    After the 2016 election, covert hatred, racism, and sexism became overt. We should expect it to become even more brazen now. We cannot allow this to become commonplace in our society because words are not just words despite what some might say. Words are powerful. Our voices are powerful. So be mindful of what you say and what you allow to be said. You cannot control what others say but you can control whether it is a safe place for them to say it. 

    Call people out. Question the intent of their words. Stand up for the communities you are mourning with today every single day. It is simply not enough to vote and fade into the background until the next election. We need to protect the most vulnerable in our everyday lives. We don’t need to start a fight or insult each other – we just need to make it clear that racism, sexism, homophobia, and ableism are not welcome in our circles. 

    My spirit was broken in 2016 but seeing the same brokenness in others is reminding me that I will live and thrive in spite of those who want nothing more than to see me fall. We will get through this but we need to do it together.

  • A Normal Day

    I was meeting up with my friend who I hadn’t seen in years and I was excited. Normally, a part of me would be itching to find a way out of an outing, especially one in the city. Instead of giving in, I found myself seated in front of her with a coffee in hand and a huge smile on my face.

    I felt the embrace of the warmth from the sun and it almost rivaled that of the warmth I felt from catching up with someone I have so much love for. We shared stories, reacting to each other’s life updates with jokes, laughter, and exaggerated faces. Even as I told her about my health, I felt normal. She’d known me almost my whole life so after saying “I have a catheter” I somewhat expected her to look at me differently. 

    She didn’t.

    We stayed there a little longer until the ice in her coffee had melted and my Americano had become lukewarm. Walking through Manhattan had become second nature to me at that point. I was dodging cracks in the sidewalk and tourists with children without missing a beat. Our conversations flowed over the heads of people splitting in between us. It was so natural. So normal. 

    As we neared Penn, I felt a tug and the now familiar feeling of my stomach twisting. 

    You’re bleeding. You’re sick. Something is wrong.

    I wanted to push through it because it was a beautiful day, so we kept walking until we hit Times Square.

    You are internally bleeding. Go home. You have a flight in a week. You won’t be able to go. You have work tomorrow and you have to travel by subway. You’re going to screw it all up because you’re sick and there’s nothing you can do about it. 

    I blamed needing to go home on being tired, yet I could not be more awake. I was alert and my anxiety was making sure that not a single one of my muscles could relax. I was wound so tightly, I wondered if I’d snap. 

    I couldn’t even focus on our goodbye because my anxiety had taken over. I was on autopilot. My thoughts were racing and my mind was not absorbing anything around me. I might as well have been blindfolded with headphones on. My body moved with practiced precision, but my mind stayed on one topic. 

    I walked straight to the bathroom at Penn.

    Maybe it’s just because I need to empty my bladder. Maybe it’s just pushing on the catheter. Maybe – blood. 

    I’d like to say that after almost a year of having a suprapubic catheter that moments like this don’t upset me. I’d be lying to you and I’d be lying to myself which I promised not to do anymore. As always, it devastated me. It consumed my every thought as I walked to the platform, got on the train, and watched the stops pass by in the window. 

    This is your life now. You have to get over it. Stop whining. It could be worse. Other people have it worse. What is wrong with you? You could be dead. You could have killed your kidneys. Then you’d be really sad. Stop feeling sorry for yourself. You are fine. Stop being upset. God, you’re such a baby. How embarrassing.

    We approach my stop so I get up and I prepare my face to convey exhaustion over every other emotion that’s passing through me like ripples of a tsunami. You’re fine.

    My sister and mom are there to pick me up and thankfully they’re in their own conversation. One that doesn’t need my input. Thank God. My head rests on the back of the seat and I daydream of a normal day in the life of a normal person. You’re not normal and you never will be. 

    When that just leads to turmoil, I redirect to finding a reason. Why did I bleed today? What caused it? If I call the nurses they’ll tell me it’s probably fine and they don’t know either. “Maybe it’s an infection” or “maybe it’s from walking too fast”. “Maybe” but never sure. No one is ever sure. I am on my own. 

    We stop at Michael’s and my mom asks if I want to come in. When I decline, she turns in her seat. I see her analyzing my face, looking me up and down for any signs of distress. “I’m just really tired.” She nods but I know I didn’t convince her. The door shuts and it’s quiet. 

    A deep sigh is released and I sink deeper into the seat. I shift wrong and feel the throbbing of an irritated bladder. I loosen the cardigan around my waist and a lightbulb goes off. When my mom comes back, I finally admit that I was bleeding, that I thought about it and think it was my sweater hitting the incision. 

    Ah. An answer.

    I haven’t written here for awhile because where I’m at in my journey now is hard to capture. My daily life is full of these moments. Questions without real answers, just speculations. Life is full of unknowns and my anxiety hates this. It takes its frustration out on me.  

    Having a chronic condition feels like grieving over and over again anytime there is a flare up or you are reminded that there are limitations to what you can do and experience. And while I am trying to grapple with all these emotions, I am expected to be an employee, a friend, a sibling, a daughter. 

    I know they’d understa- how long are you going to keep crying over the same thing? Move on. Everyone else did.

    Me 

    My Anxiety 

    I want to acknowledge that after this day, I traveled to see my best friend and had the most incredible time. I hiked, I spent time in nature, I traveled home to see my siblings graduate, and I already have plans to travel more this month. I am often too quick to dismiss the days anxiety disrupts because it’s convinced me that talking about it is complaining. That I am somehow not showing gratitude for all I can do.

    Two things can be true at the same time. I can hurt over the fact that my life is not as I expected it to be. I can also feel grateful that I am able to experience all these wonderful things in my life. One does not negate the other. One does not alter the other. They both exist in me and sometimes it feels as though I am at war with myself.

    So, today, I acknowledge the days where contradicting feelings exist in me and I hope that one day, I can hold space for both without judgement. One step at a time.

  • Puzzle Pieces

    This year I felt myself break into a million pieces like the puzzles I used to complete with my Grandmother in the mountains. We’d marvel at the masterpiece we created and it always looked better than it did on the box. 

    I would run my fingers over the bubbled pieces and marvel at how everything fit just right. Perfectly cut and perfectly placed. And then we would break it apart to put it back in the box. Up on the shelf it went, broken but preserved. 

    But I didn’t just fall apart, I shattered. Pieces of me are lost forever in moments I wish I could forget but are burned into my mind. It started off so small that I didn’t realize so much of me was missing until I started to cut myself on the jagged edges of my anger. Razor sharp with a razor tongue, my rage masked the deep loss of who I was before I walked into that hospital. Before it all changed.

    The first piece was taken from me when I was forced out of my body. Watching from the outside as I writhed on the table in pain. I never made a sound because I didn’t need to. My body’s uncontrollable shaking spoke for me. There was nothing I could do and I couldn’t take it anymore but they had to get the catheter placed. They just had to. 

    When they finally got it, I remember someone clapped like they had performed a miracle. Like the violation of my body was something to be celebrated and I should be grateful.

    My sight was the first sense to fully return. The walls were white but not white enough that they felt clean and fresh. In fact, I’ve been in enough hospitals now to say that they feel sterile but not clean. Nothing that happens in them constitutes that word in my opinion. 

    I saw the doctor who clapped holding up the drainage bag. She was talking and I was nodding but it was like we were underwater. I didn’t understand a word she said. Out of the corners of my eyes I saw the four other doctors and nurses move around me to discard everything I had sullied as though they could ever erase the feeling of death in the room. 

    My sense of touch came after. I was freezing and tight. Bending my limbs to sit up and start my move off the table was like bending the limbs of a fresh out of the box action figure. Except I felt completely used. 

    I shakily got off the table and finally heard something. “You did great.” 

    After a procedure like that, they make you change back into the clothes you came with. The clothes I hadn’t expected to take off when I first got there. I could hear them shuffling out there, working to make the room seem like I was never there. I wanted out as soon as possible but I was stuck staring at myself in the mirror holding my clothes. 

    I couldn’t cry but I felt the pressure behind my eyes like it was only a matter of time. The bag that was now attached to my right leg was filled with red liquid and I felt the urge to throw up. “It’ll pass,” they had said. In my nightmares, I see blood. I don’t know if it ever really passed. 

    I put the clothes on but felt like an imposter in them. Staring back at me was me but my eyes were different. Distant like I was still in the corner of the room, watching myself from afar. I needed to get out. 

    Much later as I laid on the couch, uncomfortable and drained, I remembered something they said to me as I was leaving. Once I exited the bathroom, dressed in clothes that no longer felt like mine, I asked them about what I should wear. I had meant to say “to school, to work” but I guess I forgot to add it.

    “Just wear sweatpants! They’ll hide it no problem.” 

    Surprisingly, I think that’s the exact moment the first piece was taken. It was a life sentence of a loss of autonomy. 

    From that moment on, I can only speculate when the other pieces went missing. It could have been every time I had to wait, hunched over in pain, waiting to be seen in the ER. Surrounded by more not white enough walls. 

    Or maybe it was one of the times my bag unhooked. Was it the time I was putting children’s leggings away at my retail job? It was closing, thank God. One wrong movement and the bag on my leg tried to hang itself up. I ran to the bathroom holding the tube as tightly as I could but the damage was done. The manager that day was a friend and I laughed about it with her. I made a joke of it and counted my blessings that the store was closed. I apologized to my co-worker and explained what had happened. Because how could I not? It felt shameful to hide it.

    I went home and I was off. My mom could tell. She tiptoed around my feelings until I dropped my napkin and burst into tears. It was such a small thing, something I can actually laugh at now, but some days I can reach out to that memory and touch it. It feels relevant, alive. And I feel that despair like an ache in my bones. 

    It could have also been the day I got my suprapubic catheter placed. Laying in the same room where the foley was first placed, holding my mom’s hand so tight my fingers went numb. I was fully awake, eyes screwed shut, as a grown man placed all his weight on the end of the spiked tool. The “sharp” part was placed directly on the spot I would forever be open to the world and if I wanted to, I could turn my head to see the ultrasound. A visual of my bladder refusing to be perforated, fighting back against this foreign invasion.

    I don’t blame it. I wanted to fight back too. 

    My head was spinning by the time they finally got the tube in. The dizziness came from the fact that at some point, my curiosity got the best of me and I did look at that ultrasound. 

    My mom left the room as soon as she could. She was terrified to let go of my hand but even more terrified that any more time in this room might lead to her body on the floor. I get it. I hated this room too. 

    This time, I asked questions. “How do I care for it? How long do I need gauze? When can I take a shower? What are signs of infections to look out for? What can or can’t I do now?” My questions were thorough and their answers were vague. I was completely left in the dark.

    “Just wash it like a normal body part.” 

    “Until it stops bleeding.” It still bleeds every once in a while and that is apparently normal. 

    “Tomorrow.”

    “Redness, discharge, or swelling…but you’ll have all those things for a few days.” I had all of these for weeks. 

    “You can do everything.” With research I found that there are things I should avoid. Like swimming in lakes for instance. Makes sense. 

    With those ridiculously unhelpful tips I went to the bathroom to change. The experience was similar to the last. I watched myself in the mirror as though I was watching a video of someone else. She mirrored my movements, but I couldn’t feel farther from her. The bag was red again.

    But in reality, it might have been the days that followed.

    “You’ll be back to normal in three days.” 

    To this day, I remember those words piercing my mind like bullets. There was nothing I could do to evade the onslaught of dark thoughts that covered me in netting, trapping me and holding me down. There must have been something wrong with me because by day three, I was still bed-ridden. I was still in pain. 

    It was probably 2 weeks in when I started to feel truly defeated. The internet had been more forgiving, stating that by week 2 the incision would be healed. It wasn’t. In fact, I was still feeling the tearing tug of a stitch every time the catheter moved, every time I moved. It bled through gauze, my clothes, and I was nauseous all the time. But, according to the nurses and doctors, I was fine. It was “my normal.” 

    By week 6, I finally felt relief. I could reach down and pick something up without pain. To be honest, I still felt pain then and I still feel it now, but going from a constant burning to the occasional stab is a win. I cried when I put my shoes on for the first time. 

    As you can see, there’s a few times those pieces could have been lost. All I know is a few months ago, as I pieced myself together, I wondered if I’d ever feel whole again. If I’d ever move past the grief of the missing parts of me. 

    And then it was Christmas Day. A day that I have a complicated history with. 

    Someone has been missing from this day for 6 years. I feel his loss like I feel the loss of myself. For 5 years, this day felt like a chore. A day to get through, smile through, survive through. I’m used to those kinds of days. 

    But as I sat there watching my siblings and parents open up their gifts, I realized that a weight had been lifted. I wondered if it went with the pieces. 

    Then it hit me just as the clock struck 12:00 am on New Years. The puzzle is complete. I am complete.

    The pieces I lost were part of a puzzle on top of mine. A picture created to be accepted by the masses. A protective shield to keep myself safe from judgment and perception. This year shattered me into a million pieces. And because of that, people saw me for everything I am and everything I’m not. It forced a vulnerability that I’ve craved for years. One that deepened connections with others and with myself because for once, I could be fully seen. 

    When I look in the mirror now, I see me. And no, the clothes still don’t look right. So, I threw them out. I found clothes that do. 

    In this story of annihilation there is a story of self-discovery. I still believe parts of me were left littered in all my worst moments but I can see the picture more clearly now. I can confirm that it does in fact, look better than the one on the box.

  • Lessons Learned

    “Write hard and clear about what hurts.” – Ernest Hemmingway 

    This condition has brought out the worst in me. It’s made me bitter, angry, and ungrateful which is someone I never wanted to become. I’ve always tried my best to be thankful for everything in my life and lead it with love and kindness. So, it’s safe to say I’ve struggled with being dealt a bad hand. 

    Partially because I hate relying on others. It’s been ingrained in my mind since I was a child that showing too much emotion makes you weak. So, I’ve learned to brush off a lot of what I’ve been going through with a jab at my own suffering and a laugh that sounds genuine even to myself. All the while, underneath that facade I’ve been crumbling under the weight of my own mortality.

    One of my favorite sayings, “life is short” became a death sentence. It was a constant reminder of all the parts of life I couldn’t be a part of now because of my new body and all of its attachments. For months I felt like I was drowning and at some point I just wanted to stop swimming. And sadly, I realized that we’ve all been in a dark place like that at some point.

    For months my nights were the only time I could really express just how scared and tired I was. I would cry myself to sleep in the hopes that I could carry this anguish by myself and not be a burden to my friends or family. Of course, I would be lying if I said that my hurt didn’t find its way into heated exchanges or fits of crying at the dinner table over something as small as sibling debates. And in those moments, I was shown a kindness and love I don’t know if I fully believed I deserved. My family has never wavered in their support through this journey even when I’ve been irritable and frustrating to be around. 

    I hit a turning point in this healing process when I finally was vulnerable with my nurse. I had to make an emergency appointment because I was dealing with two infections. One at the site and one in my bladder. For a week, nothing was sitting well in my stomach and I felt sick every day. My body was fighting and I didn’t even notice until I felt so bad, I couldn’t focus. 

    I was sitting in one of those doctors office rooms where the walls are still littered with outdated posters about COVID-19 waiting for her. At this point, these rooms have seared themselves into my brain from the amount of times I’ve seen them in real life and in my nightmares. I still get a sinking feeling in my stomach the moment the door opens and I see the exam chair. The waiting room still triggers my anxiety and I feel like I’m reliving the first time I entered that office. And I still walk away feeling like a part of me was left there. But it gets a little easier every time.

    She was swabbing my site and draining my catheter, telling me this was normal, “my normal”, when I finally couldn’t hold the dam back. I tried desperately to keep my voice from wavering. I wanted to be strong but my body couldn’t handle it anymore. I heard it in my voice, the moment it cracked and let her see the person under the patient. I saw her face change through my blurred vision and I all but begged for confirmation that this was my forever. Because I could never accept my life if I was constantly waiting for a healing that wouldn’t come. 

    This was truly the first time any of the nurses or doctors who treated me didn’t downplay my experience. “We didn’t expect these complications because we don’t usually have to do this to someone so young.” I felt the air leave my body and the tension release from my shoulders. She told me the pain from the tissue around my site might take years to heal. She told me that UTIs are common and can be severe. She told me that the youngest patient other than me is 40 and they struggle too. She told me that she had no idea it was affecting me this much. 

    And she wasn’t the only one. I’d argue that only two people outside of my family ever really knew how bad I had gotten. How my mom would repeatedly say “you’re okay” just trying to hold me together after a particularly bad day. How I would call my friend and cry on the phone for hours just to turn around and go to work the next day like nothing happened. How I would physically fall to my knees in defeat as I got ready to go out with my friends. 

    Vulnerability is a concept I’ve always battled with. On one hand I recognize the power of being open and honest with others. In fact I encourage it. Yet, when my back is against the wall, I’d do anything to avoid the scary feeling of showing someone the sides of me I’ve hidden so well. 

    As I continue to navigate through this, I see vulnerability as a necessity. In the moments that I’ve let my mask slip, I’ve felt seen. So many of us suffer in silence and thus, suffer alone. If not for the people in my life, I would’ve melted into my couch and I would’ve lost my will to fight for a life I deserve. A life I CAN have. 

    So, what did I learn from all this?

    I learned that life is absolutely devastating and that is what makes it beautiful.

    None of us make it out of this world unscathed. The strongest fronts can hide the hardest fights. Yet, we endure. We survive because of our own resilience and because of the people along the way who refuse to give up on us even when we do.

    This past month, something clicked. I wish I knew exactly what it was. All I know is that the feeling of being grateful for the sun, and early mornings, and good coffee have found their way back into my life. For the first time in 8 months, my smiles and laughter feel genuine. And I don’t feel alone anymore.

    As I continue on this journey as a human and someone with a chronic condition, I will lead with kindness and love towards others AND myself. And I will try not to be angry at the times I can’t. I will just continue to do better and be better because that is all I can do. That is all I really have control over.

    I’ve learned to find that comforting.

  • If I’m Being Honest

    “You are not the darkness you endured. You are the light that refused to surrender.” – John Green

    There are days where I feel crushed by the weight of my own existence. I am Atlas, holding up my world, knowing that the only option is to suffer through it. Hoping that this pain isn’t as permanent as it feels. 

    “Healed.” The word feels like an empty promise. Something doctors tell you to justify cutting you open and putting a foreign device in your body. “It’ll be better when you’re healed.” 

    Except their timeline doesn’t look like mine. 24 hours after that procedure I did not jump right back into my life. It was the most isolating feeling to return home with a permanent piece of me missing. My body will never be whole again. I will never be whole. 

    A month later I am still feeling pain. My body is rejecting the very thing put there to save my life and I can’t blame it. I want it gone too. I want my body to sew me up and protect me from the object invading me every day. I want my body to work the way it was supposed to all along. I want my body back. 

    But most importantly, I want to not feel like this is all I am now. I want to cry and scream about how much I miss my body without feeling like I’m not grateful. I want to talk to people about how difficult it is to wake up every morning and know that my life is forever changed without wondering if they think I’m complaining too much. I want to explain how absurd it is that I talk about this event as though it’s just a minor blip that’s building character when it has affected every part of my life. I want to admit how terrified I am that if I say everything I’m feeling, I’ll be talking to an empty room.

    I’ve written countless posts where I detail my visits to the ER, the indescribable pain, and the night terrors that wake me up every night. I’ve written them all in tears and hid them away. No one but me has read them. I am protecting myself from being put on display and giving others the opportunity to pick me apart and question the validity of my feelings. The craziest part is that no one could discount my feelings more than I do. 

    These past 7 months have felt like years. I’ve been forced to grow up quicker than I wanted both mentally and physically. Before Jean-Ralphio, I joked that I was a 24 living in an 80 year old man’s body with prostate issues. It was never really a joke and it isn’t one now. I am 25 with a catheter. That sentence is heartbreaking. I am heartbroken. And I am trying my best to get to the other side. I am trying my best to rely on people. But it’s one of the hardest things I’ve ever had to do. 

    I don’t know how to ask for help. To let people care for me the way I’ve always cared for them. I don’t know how to care for myself that way. I don’t know how to live this new life. 

    I’m just trying my best. And I guess I’ll start with telling my story as it is. Not as I wish it was.

  • Not a New York Minute

    “But we cannot simply sit and stare at our wounds forever.” -Haruki Murakami

    I never liked the city. When I was younger I could list everything I hated about the city as easily as listing my favorite books. I associated it with the fear of losing sight of my siblings, long car rides with stressed out parents, and the smell of sweat hitting hot pavement. 

    The only thing that made the trip worth it was my grandfather. He loved the city. After he passed away, I tried to fall in love with it the way he had. I tried to see it from his eyes – freedom. 

    I couldn’t. 

    Then, when he passed, the city stayed his. Visiting was my way of returning to a moment in time where he and I both existed. But this version could never last because it wasn’t real.

    I finally met the city my grandfather knew so intimately when I had to venture in for grad school. Maybe it was the healing I did with my therapist that gave me the clarity to see what he did. Or maybe it was the act of becoming one with it. 

    There is an art to walking the streets of Manhattan. To fitting in. But the beauty of it all is that once you have mastered it, you can be anyone and no one at the same time. 

    In a city filled to the brim with people who stare straight ahead and pay no mind to those near them, I find myself comforted that I am merely an extra in their story. Because when I get on the subway and sway along with the other passengers, I don’t have to wonder if they noticed that I only wear wide leg pants or obsessively touch my leg to see if I need to empty soon. Instead, I get to pretend that I’m just like any of them. A person on their way to school. A person with a life controlled solely by them. 

    I got my suprapubic catheter procedure done on August 3rd. Since then, I’ve dreamt of New York City. The skyscrapers and the sound of trains screeching to a halt invade my daydreams as I sit on my couch, holding my stomach and praying for the pain to ease soon. Here, I am me and everything that’s happened to me. I am not invisible. 

    Yet underneath the surface I am hurting from a wound deeper than the permanent one the surgeon sent me home with. I am surrounded by those I love and yet, I am alone in my mind, thinking about all the things I’ve lost. All the parts of me that will never be whole again. 

    I crave the city for the ability to disappear into the masses and simply be. With no expectations of who I am or who I’m supposed to be. 

    But I’ve been here before. I’ve been at the bottom staring up, knowing that if I just start the climb I’ll get there eventually. Until the dirt stops giving way under my hands I’ll dream of New York City. And when I finally get to a place where I can go back to work, I will cherish the ability to release myself from the chains that I’ve placed on myself, tethering me to who I used to be.

  • Giving Thanks

    “Talk to yourself like someone you love.” – Brene Brown

    In middle school I was a cheerleader. It’s hilarious to think about because at the time, it confused most people and even to this day when I mention it, people tilt their heads to the side slightly and squint. Like if they strain hard enough, they’ll be able to find something in me they hadn’t seen before. 

    I don’t blame them. I’m not exactly brimming with pep. I’m an enthusiastic person for sure but when it comes to doing the whole high ponytail, giant smile, and jazz hands with pom poms – I just don’t fit perfectly into that picture. But, I was at every game, cheering on the football team even if they were losing (which was most of the time). 

    That part of cheerleading, I was really good at. Still am as long as I’m being a cheerleader for someone else. When it comes to patting myself on the back or even thinking “nice job” about anything I accomplish, it usually follows a conversation with my mom, a friend, or my therapist. I’ve been working on acknowledging my success for years because it does not come naturally. 

    I wouldn’t say it’s now “natural” since I have to use my life support (aka Jean-Ralphio) as a baseline for how amazing it is that I did something…but it’s a start. This past semester was hands down one of the most difficult in terms of finding motivation to work through the depressive episodes Jean-Ralphio’s arrival brought. My desire to get up and study or work on my thesis was nearly non-existent. For the first few weeks after the initial placement of Jean Ralphio, I was a shell of a person. An angry, hurt, scared person who barely got out of bed from soreness, embarrassment, and emotional anguish. The fact that I am now living my life every day as though he’s always been with me is a feat that my therapist had to point out when I started back up with her again. I called her around week four and the first thing out of her mouth was “it’s only been a month?” 

    I was completely taken aback by that question. She was right, of course, it had only been a month. And here I was sitting outside on campus, calling my therapist, and telling her about this life changing and life saving experience that I was “frustrated with because I am still having a hard time adjusting.” In that moment the light bulb went off in my head and I was once again realizing that somewhere in my brain, I was keeping myself from truly appreciating my resilience. I was going forward on this journey and in my life with the same mentality I did when my grandfather got sick and passed away – this is what is expected of me. 

    Funnily enough it’s not what was expected of me (then and now). People expected me to be an emotional mess who couldn’t get straight A’s in her first semester because of the weekends spent in the hospital room holding her grandfather’s hand. People expected me to be an emotional mess who wouldn’t complete her thesis and last semester in graduate school because of the constant reminder that her body stopped working. And both of those outcomes would have been completely understandable. 

    So why? Why is it so hard for me to be my own cheerleader when I look at myself, my challenges, and my accomplishments like I am for everyone else? I don’t know. 

    Maybe it took Jean-Ralphio coming into my life for me to appreciate just how much I pushed through. Because let me tell you…there is nothing more uncomfortable than standing in front of a room of your peers and presenting your thesis project…all while literally peeing in front of them. It felt like I had taken the “pretend they’re all in their underwear” and flipped it on its head. Instead of them being just as vulnerable as me, I was under a microscope and every part of me was being picked apart like I was the Operation guy (if you’re too young, it was a game we played when I was a kid…goodness I feel old). 

    But I survived that. And I killed it. 


    Then, I got to walk across the stage of the United Palace and receive recognition as a Masters Graduate from Teachers College, Columbia University. I graduated from an Ivy League school and I can’t promise that until Jean-Ralphio, I would have felt as proud of myself as I do now. I like to think that maybe he was a blessing in disguise in more ways than one. I’ve always been that person that is thankful for everything from the soft pillow I put my head on at night to the people who loved me when I didn’t love myself. I love to think about the wonderful moments in life that make the horrible moments just a little more bearable. But now, I see the beauty in my own actions and I’m thankful for them too.

    I’m thankful for waking up every morning and getting out of bed. I’m thankful for calling off work when I’m sick because whatever was in my stomach wasn’t enough to fully absorb my medication instead of sucking it up. I’m thankful that when a pair of pants doesn’t quite feel right and they hurt to put on, that I let the tears fall and pick out another pair. I’m thankful that when I change into my night bag and spill, I no longer cry and simply laugh (because there’s no point in crying over spilled urine). I’m thankful for being vulnerable and letting people in instead of pushing them away. I’m thankful for allowing myself to openly grieve a life that no longer exists. I’m thankful for the fact that I can lightly jog (and I do). I’m thankful for finding time to love myself the way I love everyone else (even though it’s really hard sometimes). I’m thankful that I decided to go to therapy in 2021 because I was struggling with the pandemic. I’m thankful that in 2023, I started it up again when I realized I was falling into old patterns. I’m thankful that I sat through classes in uncomfortable chairs but kept showing up. I’m thankful that I asked my professors for extensions only when I really needed them. I’m thankful that I said I wanted to graduate when my advisor asked if I needed another semester. I’m thankful that somewhere in my subconscious, I believed I was worth applying to graduate school. I’m thankful that I’m alive and made my family and myself proud. I’m thankful that every time I wanted to quit, whether it be now or 7 years ago, I never did. 

    One day, I hope I’ll be my biggest cheerleader. Until then, I’ll be grateful for the progress I’ve made in that department. Along with everything else.

  • Spring Day

    “No darkness, no season can last forever.” – BTS Spring Day

    Spring is a symbol of new beginnings to me. It’s the yearly reminder that there is a light at the end of the very cold (and sometimes snowy) tunnel. This situation is my cold tunnel and the new life I’m  learning to navigate is my spring.

    On March 13th, I went in for a urodynamics test. The doctors joked that I didn’t need to study for this test but when I finally had to do the one thing for them to test my urinary tract, I felt completely unprepared. It involved the one thing I’m really not good at – urinating (surprise surprise).

    The urodynamics test involved filling my bladder with liquid and placing sensors around my pelvic floor muscles to see how much I could urinate and the strength of my pelvic floor and bladder. The test results as you can imagine were not promising. It appears that my bladder was unable to produce enough pressure to push the urine out. Apparently, being stretched out for so long made it weak and there’s no fix for a weak bladder. 

    Logically, I can reassure myself that I asked for help and I went to an expert and I relied on the doctors. But on another, more human level, I battle my mind every day from blaming myself and questioning all my decisions that led to this. 

    My doctor, in the hopes of not completely destroying any hope I had of a regular life for a 24 year old, recommended acupuncture and pelvic floor therapy just in case. Just in case there’s a miracle and my bladder does have strength, but just needs more time and help to adjust. The kicker is, even if I magically could pee in a year during the next urodynamics test – I’d never trust my bladder to do its job. I’d be paranoid that it isn’t emptying fully and I’m slowly poisoning my body. 

    So, even with that possibility, I know my options are limited. For the sake of my sanity and health, I’ve chosen to go forward with a permanent catheter. The options are 1) catheterize myself every four hours through my urethra, 2) through a suprapubic style catheter or 3) through a mitrofanoff style catheter. Since I’m not a doctor, I’ve added links to the last two types of catheters which are my only real options. Due to the torturous nature of my urethra, I would never be able to catheterize myself through my urethra. 

    But, with a thesis and graduation date looming over my head – surgery has to wait. It has to wait because while the timing will never be perfect,  I need to mentally be ready to face my new life and I want to finish my old one first. 

    Ultimately, life looks different now. The news has affected the way I think of working full time, moving out, creating a family, and just living in my 20s. And some days these thoughts pass without much turmoil. And other days the thoughts engulf me completely until I feel like I can’t breathe. 

    The duality of these feelings makes it hard to explain to others and even harder to comprehend myself. But, I know that these feelings are valid. 

    And yes, this isn’t a great situation. It’s shitty and it sucks and sometimes I ugly cry about it. But it’s also a new start at life without pain and silent suffering. As the weather gets warmer, I’m not frantically searching for shirts that cover my abdomen or light jackets that I can wrap around my waist to hide my distended right side. I’m wearing clothes that I only ever got to wear once a month, if that. I’m also finally eating enough without worrying about being physically sick all day. Hell, I can even walk around with an iced coffee and not be laying in bed hours later in the fetal position cursing myself for indulging in one drink. 

    I can travel now. I can travel without worrying that I’ll ruin the experience or have to fight through the pain. I can take my sister up to college without staying up all night using the bathroom because I had to hold it on the four hour car ride…and then feel like puking the whole four hours back from lack of sleep and lower back pain (yes, this really happened). 

    I know in due time, this new world I’m experiencing will become my normal. This new body I’m in will one day feel like mine. So, here’s to new beginnings and the people around us who make it possible to survive the winter to get to spring.

  • March 28, 2023 – Facing Reality

    Yesterday, I had an odd experience ringing up a customer. I find myself in precarious situations often working in retail. I can’t tell if shopping for clothes makes people open up more or if they can sense that I go to school for psychology because I swear, at least once a day, I’m learning personal details of these people’s lives. And I don’t mind it. I just find it interesting. 

    So, I shouldn’t have been so surprised by this conversation but it took me off guard. This woman walked up to the register and she looked upset. Mind you, that happens and oftentimes they take it out on me. I was waiting for the rant about how these clothes are too expensive or how she couldn’t find anything she liked because fashion has changed so much. Instead, I got a teary eyed explanation as to why she was buying a size too big for her body. 

    The moment she put the pants and shorts down on the table she asked me how our sizes run. I explained that they’re pretty true to size, because they are. She looked more distraught by that answer and it confused me without the context. “These aren’t my size. I’m not a size ___.” Somehow before she told me, I already knew that this was more than a weight comment. I get people coming to me and talking about how they gained weight and I hear the disappointment and shame but this was different. I know because I’ve felt the unheard words hang in the air when I talk about the clothing I have to wear now. 

    “I can’t wear anything else.” 

    She lifted up her oversized shirt and showed me that the top half of her legs were in braces. They were bulky and looked uncomfortable. Again, I don’t know what prompted her to choose me to show or if her repeating “these aren’t my sizes” was her trying to convince me or herself. All I know is that at that moment my brain was at war with my feelings.

    I wanted nothing more than to lift my pant leg and show her why I couldn’t wear jeans or leggings anymore. I wanted her to know that I understood on a level that no one who isn’t in our position can. Because in the grand scheme of things, wearing bigger pants isn’t the end of the world. It is, though, a symbol of the end of my old one. 

    I didn’t show her and I didn’t tell her. I struggled with that in the back of my mind the rest of the day. I felt so ashamed that I hadn’t been honest with her the way she had been with me. I placed the blame on the fact that I’m at work and it would be inappropriate and maybe it would have been. But, I think about what it might have meant to me in the beginning if someone had shared that with me. To know that I’m not the only one struggling with putting my old clothes to the side in exchange for new ones. Or to know that she probably lives in pajama pants and sweatpants at home because it’s easier, not because she wants to. 

    It’s frustrating that I questioned whether to be a good human or a good employee. And maybe, just maybe I’m using that as an excuse. Maybe I just wasn’t brave enough to be that open because when I saw her face and heard the crack in her voice I was seeing a window into my feelings. Ones that I’ve gotten so good at glossing over these past few months. 

    A few weeks ago I spent an hour trying to decide what swim bottoms I liked better. Which ones would fit me best and which ones I would feel comfortable wearing to the beach. I bought these with the hope that the conversation with my doctor would be a conversation about when Jean-Ralphio and I could finally part ways. I bought them knowing the chances of me ever getting to wear them were slim but I did it anyway. So maybe I just wasn’t ready to face the unresolved feelings of my life changing in ways that I wasn’t ever prepared for. But, if I could go back, I would have said something. I would have told her that I get it.

    Because on some level, I’m incredibly grateful that Jean-Ralphio can be hidden under wide-leg linen pants. On another level, I wish he was out in the open for everyone to see like a cast or a scar because then maybe it wouldn’t feel like I’m carrying around this secret. Maybe it wouldn’t feel so lonely.

  • The New Guy

    “People who need help sometimes look a lot like people who don’t need help.” – Glennon Doyle

    Let’s address the elephant in the room. It’s time to introduce Jean-Ralphio so you all can get to know him better since it seems like him and I might be in it for the long-haul. 

    Jean-Ralphio is a foley catheter bag that was attached to my leg on February 23, 2023. Even though he’s only been around for about four weeks, it feels like just yesterday the doctors attempted a total of ten times to insert him correctly. While they were trying to figure out why every time they went to put him in, he was hitting resistance; I was laying down with my eyes shut so tightly I saw stars, praying to God to just take me already. Yes, I’m being slightly dramatic but I was genuinely bargaining with God at that moment. It felt like I was in my own personal hell.

    A hell where there are five doctors all staring at my urethra with syringes and wires in their hands looking like I was a science experiment gone wrong. Normally, I like being able to stump people. You know, like the “wow she’s so strong despite being 5’2 and having a tendency to cry when feeling any type of emotion” kind of stumping people. Not the “wow she’s so anatomically wrong that her bladder is holding a dangerous amount of urine and none of our very innovative and proven methods are working to get this catheter in” kind of stumping people. 

    Nevertheless, the doctors were experiencing that moment where they realize people are a lot more complicated than those test dummies they practiced on and they’re thinking “we never learned about this in med school.” 

    So, there I am on the exam table praying to God and cursing every doctor that pushed me to get a second opinion after my doctor in 2019 sent me home with a pat on the back and a lackluster “sorry for your shitty situation. Sucks.” He didn’t actually say that, but it definitely felt like that’s what he meant. 

    This is not the first time I’ve asked for help. First, was when I was a child which I already spoke about. Second, was when I was in my junior year of undergrad. I started having a harder time urinating (aka my stomach was starting to resemble a 3 month pregnancy belly daily). I won’t even spend too much time on this part because he is that inconsequential. I had another cystoscopy and he threw in a dilation to sweeten the deal. The dilation was an attempt to stretch my urethra to hopefully allow for more space for the urine to exit my bladder. Spoiler alert; it didn’t work. At least that time, I was under for the procedure so there was no pain. Just disappointment. 

    Back to my new friend and urinary tract lifeline, Jean-Ralphio. He and I didn’t get along much in the beginning. He made it uncomfortable to sit down, walk, and if I laid down with the leg bag on, I worried the urine might go back up and cause infection. This made things difficult. Not to mention the violently ill morning that followed the placement of Jean-Ralphio. I felt like my body had been violated and was trying to get rid of anything that might remind it of what it had endured.

    This enemies to lovers story stays in the enemy territory for about two weeks. Aside from the discomfort that I swore would last forever, I was truly concerned that any change in my symptoms was a sign that I had somehow gotten an infection from Jean-Ralphio. Something I managed to avoid for years was now not only a possibility, but a probability. There is a mental battle that comes along with a foley catheter. 

    Aside from the looming fear of infection and constant awareness of his presence, Jean-Ralphio has some other unfavorable traits. For one, he comes with these velcro straps and a sticker that keeps his tubing in place. All of which cause itching and redness on my skin. He also smells like the vinegar I use to clean him and I swear I can smell it on me all the time (even when others say they can’t). Then, he comes with the occasional bladder spasm which feels like something is using my bladder as a trampoline and I have to replace him with the night bag any time I want to lay down (unless I’m okay with falling asleep sitting up…which I’ve gotten used to). 

    On top of that, I have anxiety. Jean-Ralphio takes me way out of my comfort zone of control. I don’t get to choose when I go to the bathroom; he does. I don’t get to choose my level of discomfort; he does. I don’t get to choose what clothes I wear; he does. In the beginning it really felt like part of my autonomy as a human being was slipping away. In those moments, I completely understand why the elderly avoid doctors and hate the aging process. It sucks when your body doesn’t work right. 

    However, relinquishing control is also liberating. I never experienced not worrying about spending 20+ minutes in the bathroom just to urinate. In all 24 years of my life (from what I can remember), my bladder was the antagonist in my story. It never occurred to me that it might be in pain too. It took me two weeks of crying, feeling sorry for myself, avoiding work and friends to get it out of my system and process it. Once I did, I started to let the feeling of gratefulness sink in that despite the years of dangerous urinary retention, my kidneys survived. I survived. 

    I used to dance around telling this story with half-truths and vague details because the thought of feeling sorry for myself simply because I can’t pee when people have autoimmune diseases and cancer made me feel disgustingly unappreciative. But, I know now that I’ve been walking around with an invisible medical issue. One that yes, does sound small if you hear it in passing. Also, one that consumes every moment of my life. Every decision I have ever made has involved my bladder. I’ve skipped going out, drinking coffee, going to the beach, and wearing certain clothing because my bladder was either causing me physical pain or was distended past my usual excuse of bloating. Now, I can leave my house without taking an hour in the bathroom, hoping I’ll get enough urine out so I don’t feel sick while I’m traveling into the city for school or driving for longer than 20 minutes. 

    And sure, Jean-Ralphio comes with some baggage (pun completely intended) but at the end of the day, he is saving my life.

    *Disclaimer: I am NOT a doctor. Everything in this blog is my own experience*