A few weeks ago I had the opportunity to talk about living with Crohn’s disease in front of a small group of young adults in their twenties and thirties. I attached the link below to the discussion.
I have found a sense of hope and healing in sharing my story with others. Although it can be difficult, it’s quite therapeutic to talk about the journey including overcoming obstacles, my faith, the low moments, my coping mechanisms, etc. I thought Chris asked great questions throughout this round table discussion. He sympathized with me, yet also encouraged me to share about how having this disease has changed me and affected me in positive ways.
I’ve had several friends who hoped to come to the discussion but weren’t able to. I thought if you wanted to to listen to me share a bit of my nineteen year journey with Crohn’s disease, you can click the link. I told Chris that he “went all Barbara Walters” on me when he asked me to talk about one of my lowest moments. Spoiler alert: it’s sad.
Even if you don’t have time to listen, I thought I would emphasize the enormous value, for both parties, in sitting across the table from someone who truly wants to listen to your story. Whatever your story may be. We have so much we can learn from one another when we take the time to hear, see, and feel life from another perspective. We welcome the opportunity to grow intellectually, but more importantly, we invite in beautiful real-life moments that can change our hearts.
I walked towards my car parked in the creepy (potentially Zombie hiding) end spot under the garage at work. I briefly watched a coworker try to hack away at his ice-covered truck. Uh. Oh. I quickly realized I couldn’t drive home tired, like I had just worked the entire day. And day before. Inside the thick walls and windowless rooms of the emergency department. Tonight, I would not get to casually listen to music and occasionally stare up at the moon following me home. On this messy winter night, my eyes would be fixed on the road before me. My hands clenching the wheel, my posture hunched over uncomfortably. The whole drive home. I wish I could just fly home. On nights like tonight.
Towards the end of my shift, co-working friends walked past me cleaning toys. A job I happen to take enormous pride in, despite the monotony and the annoyingness of the fumes and the gloves. And the tiny toys. And weird hairs, crumbs and gunk. Nosocomial infection? Not on my watch. Hopefully, one day my autopsy doesn’t reveal that yes, in fact, I died of inhaling too much of the powerful odor that kills most every germ known to human.
In between de-crumbing bins (leftover lunchables) and rearranging toys, I tend to get pretty annoyed with Ken. He’s lost his pants. Again. I’m perplexed. Why is he ALWAYS losing his pants? Where are they? Or why is someone constantly stealing Ken’s pants like they’re something special? Are they? I just can’t put his naked Barbie-loving self back in the clean toy bin. I should probably Sharpie some underwear on him. I feel more like I have a Bacheolor’s in Sani-wiping toys and a minor in alphabetizing movies on days like today. Despite my love for my job and especially the friends I see two days a week, I’m ready to go home.
I pull onto the ramp to enter the highway and notice the enormous Kansas City Fire Department truck reversing into the station. Backing that bad boy up. Now that takes practice. And skills. I could never do that. Reversing, at night, into the narrow open garage. Unfortunately, I think that truck will be out again shortly, before the engine even cools off.
I hate driving home on icy, snowy, rainy or foggy nights. After midnight. I joked with my coworkers earlier about needing to write my name on my body since I have temporarily lost my wallet. I don’t have it for my drive home. One of my friends occasionally tells me to zip up my purse, so they can identify me if I get into a wreck. Kind of a gruesome yet thoughtful gesture which is par for the emergency room nurse.
I’m creeping along on the highway. Not too slow. Not too fast. On nights like this I can hear my mom’s voice in my head saying, “pump the brakes. You’ve got to pump the brakes…” And that freaks me out. I don’t want to have to pump the brakes. I want to just coast my way home, never making a sharp turn and avoiding laying my big right foot on that brake pedal.
Suddenly, I notice several cars lined up, pulled over on the shoulder up ahead. This is uncommon after midnight. It’s too early for Monday morning rush hour traffic. My stomach starts to do a little dance. Not a happy one. The nauseating, freaked out, spinning kind of dance. This is not good. There’s a snow plow truck or salt truck blocking the middle lane. And two cars smashed facing the wrong way and there’s people out on the highway. “Please, God.” I start praying. “Help them. Be okay. Be alive. Please.” I hear the sirens coming. I pray for the first responders. For their speediness and bravery and strength. I want to throw up. I don’t want to keep driving home. I start biting my nails. All off.
How quickly life, even just a routine drive home, can be slammed into perspective. I’m certain I will not be able to sleep for awhile tonight. But I will get to sleep in my own bed. I will get to wake up and see my kids’ sweet faces in the morning. And I truly feel overwhelmed for this gift. That I’ve received every late-night, early morning drive home from work. So often overlooked. And under appreciated. I’m grateful for my job. Even the sani-wiping and half-ass alphabetizing. And I’m grateful I made it back home. Safely.
It’s a lively and stubborn combination: the work adrenaline mixed with the drive-home adrenaline, topped off by the leftover caffeine circulating through me from the coffee I desperately needed hours ago. It will wear off eventually. It has to. Hopefully before the sun peeks into the windows and before three little boys excitedly wake me saying,
“Mama, what day is it? Do you go to work today?”
And I will snuggle them, in a tired yet grateful state,
“Nope. I don’t go to work today.”
In my sleep-deprived state, I will slowly yet excitedly say the words.
I’m consciously grateful to be alive and home, yet so exhausted. It’s a Saturday-kind-of-Monday.
I prayed a short prayer on my drive into work today.
“Please. Let nobody die today.”
I knew it wasn’t a good sign that I was already crying. On my way in. Sun shining, morning crying as opposed to dark sky, moon glowing crying. On my drive home. Ackk. I had already put my eye make-up on. It’s too early. I haven’t started my shift. I need to walk into work strong, ready, happy. Not fragile and sad.
I am supposed to arrive secretly clad in some form of protective armor hidden beneath my clothes. The kind of armor that is hard to get on. It’s tight, it grips my chest. I should feel it somehow and know it’s there even if nobody else does. Right up close to my heart. Always ready, or waiting. On guard, to help protect and defend me from the unpredictable and seemingly inescapable sadness that may seep in.
I keep driving. Hoping that maybe a happy song will come on my favorite radio station. Surely that will help. They usually seem to know when I’m in my car driving to or home from work.
Maybe if I could give a dollar and a Quiktrip gift card to the homeless man that stands and sings off of my exit on Hiway 71, that may be a good sign. A sign that it will be a day where there’s more smiling. And less dying.
Yesterday, I sat in a room playing with a child who laughed easily. Literally, on the ground, genuinely laughing at the silliest things. Like me popping bubbles with a plastic frying pan. He said, “I like laughing.” And I replied, “Me too.” He had no idea how tightly I would hold onto his innocent and spontaneous words.
Spoken freely, out loud.
Later, he didn’t want to go back with his parent because he wanted to hang out and walk around the halls with me. He told his mom, “I want to go back to that room with her. Because we both like laughing.” I wish I could have hung out with him and his sweet giggling self all day long.
But I couldn’t.
The day got hard. Really hard.
And I lost my laugh.
I kept reminding myself throughout my shift, in my head, “I like laughing.” Remember. If a little boy notices, it must be true. Because I do.
Hard. Belly hurting. Silly, big teeth, open-mouthed loud, almost obnoxious laughing. Near snorting, breath catching. That kind of laughing. It feels good. So good. It feels like the world still has a lot of happy left in it.
That boy reminded me that I’ve got to step outside from underneath the dark cloud of sadness some days. I’ve got to make a conscious effort. To find the light. I can’t let the small sliver of gloom consume me. Even though it’s impossibly hard sometimes.
I like laughing. I really love laughing. I told myself this. Over and over again. All day long.
But somehow I still managed to be in my car crying on the way home. Again. Sadness can be sneaky, yet strong and overpowering at times. Overwhelming. And tricky too. You can’t suppress it for too long or it will explode or change you. It will affect how you treat those who matter the most. It might make you forgetful or short-fused. Or unmotivated to get out of bed.
I laugh when something is funny. Even sometimes, when it may not be appropriate. Nervous coping mechanism. In church or meetings or all-too-serious of not-so-serious times. And I think I function best when I give myself the freedom to cry when something is sad. I have to find the right time and the right place. And just cry. Let. It. ALL. Out. It’s damn near impossible to hold back a dam of tears for long. I tell kids all the time, “it’s okay to cry.” I believe it. And it’s okay for adults to cry, too.
I didn’t need to cry today. And that made me so happy. So happy actually that I almost cried. The happy tear kind of crying. The grateful, humbled, overwhelmed smiling kind of short-lived crying. I got to leave work talking with a coworker about how I couldn’t remember where I parked. I got to notice gorgeous Christmas lights. I even noticed Pope Francis was trying to give me a high five from the catholic radio billboard. Or it may have been knuckles. I left work on time after talking and laughing with some of my favorite green zone girls. I feel honored, privileged and just giddy to leave work happy.
I love that place tonight. I really do. Somehow.
I drove up our driveway and saw our sweet little tree barely strong enough to hold its brightly colored lights. And I just could have cried. Again. But I didn’t need to. Not tonight. That tree looked so little, yet so beautiful and happy.
I will always remember that boy saying, “we both like laughing.” He reminds me of a tiny brightly lit tree that can barely hold the weight of the lights, yet somehow unknowingly offers perfectly timed hope and joy.
The thing is that even the most perfect looking, smartest acting, kindest-hearted person has weaknesses. Imperfections. Insecurities. Despite how camouflaged they may appear. Depending on the environment they are in, they exist. Hidden perhaps. Buried maybe. Tucked away in a cabinet or in the closet. On the surface even. You absolutely cannot be walking around this world perfect. So, why do we try so hard to look like we’ve got our acts together? Countless reasons.
I used to carry a sense of shame with having these most awful, disgusting things happen with my body. I was afraid to talk about them. Like I had any control over their path of destruction. You know if diseases were ranked upon their social accepted-ness, I’m quite certain that irritable bowel diseases would not be on the swimsuit cover of “Diseases Illustrated.” Seriously. Let’s just list some of the things I have experienced which in no way compare with what other IBDers are dealing with, specifically kids with Crohn’s and Ulcerative Colitis. See what your natural reaction is to some of these: bloody, foul smelling diarrhea. Extra holes connecting one part of your body to a part that it shouldn’t. Think of your sewer pipe connecting to the water line of your shower. Going on inside your body. Your small intestine coming out of your body. A daily reminder that your body will not ever be like most everyone else. Wounds opening up so wide that you need a vacuum to suck your skin back together. For weeks and weeks. Not eating for weeks. Tubes in your nose. Tubes in your abdomen, vagina, and butt. Completely raw broken down skin that hurts so badly you can’t leave your house. Not that you even wanted to. Just wanted the choice. Then there’s the worrying about going to some awesome new place because you don’t know if or where the bathroom will be.
I could go on and on. I don’t like to. I don’t think I need to. Though I don’t want anybody’s pity. Pity parties are so lame and never have quite the turn-out you expected. I don’t wan’t to be treated differently. Unless by differently you mean more encouragement, more understanding, more tolerance, more willingness to learn. I want to walk in confidence and know that I am loved for who I am. Not what I have. Not what I look like. Not even for what I have endured.
I was 18. And scared. And so close to dying. But my damn pride and stubborn immature self wouldn’t let the surgeons do what they needed to do to save my life. I had no quality of life. I was wasting away, bleeding so much that I needed transfusions. I had not eaten in over a month. But, I was damn sure that I didn’t want to get an ostomy bag. People wanted to help. I didn’t want to listen. They couldn’t possibly know. “Don’t tell me what I can and can’t do with a bag because you don’t know. You don’t have one.” That’s how I felt about every person that came into my hospital room with their pitch as to why I should get my entire colon removed.
Until one day. In walks a guy I babysat for. I loved him. He was hilarious and he was a real live person sitting across from me, telling me that he had an ostomy bag. He got sick when he was 18. He went to college, got married, and had these four amazing girls. And all of the sudden, I felt this enormous sense of relief. He knew what I was going through. He knew what I could do. Hell yeah, I could still play college basketball. He played college intramural football. And his nickname was “Bags.” Take that.
That’s what I love so much about Jesus. He came because we needed him. Desperately. A real live person. We are so hurt, broken, imperfect, dying. If we admit it. We are all missing pieces. And he came in the most radical way, as if to say, “I’m coming to the people who recognize they need me. The weak ones.” All of us. If you’ve got your shit so together, if you’re playing the role of ever strong, über dependent, got this life figured out, you don’t need Jesus. You don’t need grace. Or healing. Or forgiveness. Or love that is so powerful it comes to your hospital room when you’re mad at the world. It walks in and says, “hey. I’m like you. I get it. This world can really suck, but we can make it better. We can change it.” One hospital room at a time.
A little hope goes a long way. It’s easier to see Jesus in the hospital and to need him. But the thing is, I need him just as much at home. My pride just sneaks in again. And I think I got this. By myself. All alone. Hold up, pride. Sit down.
It takes a village. But not a village of people with their arms crossed, bitchy faces and pursed lips. Thinking they don’t need anyone. Especially not someone like you helping them, guiding them, showing them love. I want to go to the village of open arms and smiles and tears. We laugh together. We cry together. We live life together. Not hidden. Open. Exposed. But it’s kind of scary. And you have to be that really hard word to say, “vul-nur-uh-bul.” Why does it have to be such a hard word to say and an even harder thing to be? Vulnerable. Vulnerable. It doesn’t get easier if you say it or spell it a lot of times. However, it does get easier, kind of like apologizing, if it becomes a practice. A habit. If I could only be vulnerable as often as I bite my nails.
Actually, that might be going overboard.
The thing I’ve learned is that people have opened up and shared really hard, painful stuff with me. And I feel honored and inspired and more connected. Like we’re all experiencing some of the same things. Like we are much more alike than we are different. It’s like our batteries are charged by each other. Like God created us for each other, to need each other. Help each other. Work our hardest to understand each other. And try our hardest, despite our selfish tendencies, to show love to one another.
I see Jesus people all the time. They don’t even know they’re doing these miracles. Tiny, dignity restoring, life-giving miracles. Miracles that connect us. Miracles that help us know of this insanely powerful love. A love so strong that it barges through the darkness and let’s light seep in. It’s here. I see it all the time. When I’m watching others help strangers with a love so passionate. You can feel it in your bones. And I see it the most when I’m down in the dumps. Feeling needy. Dependent. Not myself.
But slowly, the love pulls me out. Picks me up. And gives me a good nudge. The kind that makes me want to do more. Hope more. Feel more. And care for others more. I would like to think that we all carry this secret power. We just tap into at different moments in our lives. Sometimes intermittently.
This is why I get excited for Christmas. For the lights. Everywhere. Because of the enormous amount of love and sacrifice and forgiveness and grace that the humble babe born in a stable represents. He lives on in each of us. Here. Now. Really. If you start looking, you’ll soon notice there are Jesus people everywhere. In the places you would least expect them to be. Doing these beautiful powerful acts that have the abilty to change the world.
Christmas can be a time of hope, exhaustion, sadness, joy, and a sleigh packed full of many other emotions. It’s celebrated one day a year but the people that are the lights that represent Christmas continue to shine all year long.
You carry a permanently locked safe in the depths of your heart. It’s filled with unspoken lessons that you’ve learned. The ones that normal people don’t want to hear about. You know that there’s a key but it might as well be hidden or lost. You can’t freely open this bulging safe. You fear all that will spill out. It’s filled with moments, hours, and lessons learned in the hardest ways. The unspoken kind. The most impressionable. The lessons you’ve learned through watching others suffer the unimaginable, disturbing, sad, cruel and pain filled.
Quick. Close the safe. Lock it up. You won’t dare speak of the babysitters. The Internet. Sleepovers. Neighbors. Fires. Swimming pools. Lakes. Dogs. Frozen ponds. School buses. Streets. Open windows. Seat belts. Lawnmowers. Guns. Teenagers. Mental illness. Headaches. Belts. Strange bumps. Drugs. Closets. Bathrooms. Alcohol. And on. And on. And. On.
You now look at life differently. You can’t help it. You have to. Not necessarily the dirt, candy or monkey bars, but the great and infinite unknowns. You’re a lot less worried about the wounds that kids can recover from. Not the stitches. Or the broken bones. You’re in overprotective mode, hyper aware to the wounds that may break a child’s spirit. Extinguish trust. The innocence stolen. The stranger smiling at the park. Or the man alone in Toys R Us, subtly following you and your kids around the store.
You’re unsure of when you will let your kids cross the street by themselves. Maybe never. Will they ever get to go to a sleepover? Perhaps no. They will always ride in the car seat that they’re supposed to be in. Wearing a helmet is non-negotiable. Life jackets are on. You know the ways they will be most protected. And you try your best to protect yourself too. You will wear your seat belt. Always. You try and control what you can control. Yet, you still feel weak, powerless and scared at times. You silently suffer from the vicarious trauma and grief that you’ve experienced. The unforeseen, imaginable pain. You’re strangely over aware that you can only control a tiny portion of the lives you so enormously love.
Because of this awareness, you passionately do what you have the power to do. You live without regrets. You play unabashedly with your kids. When they ask, “Mommy, will you be the dog monster?” A million times, yes, you answer, especially on a Monday. You laugh loud and often with them. You hold them harder, tighter. You hug them closer, longer. You still let them crawl up into your lap with their long skinny, nearly seven year old legs dangling towards the ground. You pray honestly, fiercely. You tell them that you love them all the time. You apologize and forgive readily.
And on some rough nights, you tiptoe into their rooms and press your sobbing face next to theirs as they sleep. You’re overwhelmingly comforted and thankful that you hear and feel them breathe deeply. You touch their warm skin. You stare at their long eyelashes in the moonlight. You savor in their sleeping beauty, their innocence. And as much as you love their pouncing, giggling wide-awake bodies, you hold tightly onto these moments. The hours when they’re safely dreaming in their beds. And yet, you always leave a place in your bed for a little snuggler that had a bad dream. And needs some extra cuddling. Because you may just need it too.
Sadly, you know all of the overused sayings to be true…our days are not guaranteed. We should live life to the fullest. Cherish every day. You understand too painfully well that we will not all live to be old and dependent again. You know about the unexpected and unpredictable, yet you’re overly conscious of the things that may be preventable. Or avoidable. Because of this, most days you wake up holding onto the hope that you will be the best protector and most unconditional lover. You’re ever grateful. You quietly soak up the mundane. Like the times that you get to hold your sweet children at both the beginning and the end of the day. The long uninterrupted hugs in the kitchen.
You naturally worry about the day that they will leave your nest. No longer living under your roof constantly available for you to check on, touch, smell, hold, and see their chests rise with each deep sleeping breath. You know deep in your heart that you will sleep better always knowing they’re safe. Protected. Alive. Unhurt.
You will always hold a safe locked in your heart. Even if you never open it, you will always remember. Always.
There’s no one I would rather clean up puke with. Or sani-wipe toys with. Or laugh with. Or sigh with. You’ve always got my back. I’ve got yours too. I just so happen to love working with you. You do your job so incredibly well. Your mom would be proud. Like cry her eyes out kind of proud. I hope you know that you’re one of the best.
We speak a hospital-working language of sorts. A language sometimes without words. A language laced with patience, perseverance, humor and strength. And human weakness too. We laugh because we have to. And we cry because we need to. We support each other because we understand each other and we love each other. Like family. Work family.
I feel like you put a lot of pressure on yourself. Pressure to be the best, to get all your IV starts on the first try, and to anticipate. You always wear your critical thinking skills hat. It’s invisible but we all know it’s there. I guess that’s why you’re so damn good at your job. You better not ever quit because you truly, deeply care and it shows. People need you. I think I saw you save someone’s life today. You bend over backwards and upside down for your patients. And for your work family too. You usually carry a heavy load of emotional work-related baggage, rolling it down the long hallways on your way out. It follows you home. It causes you to over-think, over-feel and fear and love harder. It nudges you to look at life differently. Better and also worse.
You’re constantly growing, changing and sacrificing. And sacrificing again. You adapt like no other. You always want to be better. You’re probably too hard on yourself. I feel honored to work with you. Like I got picked to play on the best team.
I know all of this as truth because we’ve worked a long side each other. Right next to each other. Across a hospital bed from each other. In the halls with each other. In the break room sharing stories. When I was blowing bubbles, I also saw the compassionate and fierce look of determination on your face. I heard the click of the needle retracting. The sound of success. You do really hard things all shift long like they’re no big deal. With ease, confidence and grace. You’re phenomenal, one of a kind, not many can do what you do. The way that you do. You’re extraordinary. Every damn time. I appreciate you. And so do all of the others who just couldn’t say the words.
I want you to know something because I love you and you, unknowingly, hurt me. I can be careless, insensitive and unkind too. With my words, thoughts, and attitude. And my actions. I don’t want another person, like me, feeling sad, angry, shameful, or embarrassed, especially not a child or a teenager. Or a mother or father. Or anybody else.
I hope that I would rise up pretty quickly if it was my sister, friend, niece or mother you were talking about. I know I should defend myself, but it can be hard to do. Attention-drawing of the kind I dislike. Hot angry tears well up. They’re ready to fight, typically without gloves, and this can lead to an untranslated message. You remember the crying, not the words I was trying to say. I usually don’t like to solicit negative attention, in regards to Crohn’s disease. Or any health-related problem, really. It’s difficult to balance truthful explanations without adding too many hard-to-hear details.
I have the disease. It doesn’t have me. Complaining or whining can attract pity. No thanks. Writing has been helpful because people can read about some of the feelings that exist, the side effects of the disease. It is a disease that has taught me an infinite amount about myself, others and those who love me. Over the past seventeen years. I think it has made me more sensitive, compassionate, and understanding towards other people, too.
There is not a day that goes by that I forget that I have Crohn’s disease. I rarely have to take medicines, but I have had to be in the hospital a lot, mainly for surgeries. It is a disease that affects each individual person in a different, life-altering way. Most of us can walk around with no one even knowing we are “sick.” This can be good, and also really hard. Our foreheads aren’t tattooed. We look healthy, most of the time. We may be some of the most amazing magicians you never knew that you met. That’s why I thought I should try to reveal something to you that is very close to, well, my belly button.
I have an ileostomy. Pronounced “ill-e-oz-toe-me.” It’s a bag. On the outside of my body. It does what your large intestine and rectum, your pooping parts, do for you. Something you most likely take for granted, like breathing. Unfortunately, that’s what we tend to do. We often take the things that come so effortlessly, and naturally for granted. Until they stop working the right way. Your body works. You don’t have to worry too much, I assume, about taking care of your guts. I do have to worry about and take care of the part of my small intestine that’s coming out of my body, my stoma. It’s “my bag.”
I have worked in the hospital setting for over ten years. Most people I work with have no idea what I have endured, in regards to the countless surgeries, for Crohn’s disease. I have witnessed some really cruel faces, attitudes and unkind words being said in regards to irritable bowel diseases and specifically, ostomy bags. There is an unfair and painful stigma that surrounds them. It’s no surprise that when I try to talk with women who have no quality of life and desperately need surgery, they are terrified and do not want to get a bag. Ever.
I have had an ostomy on and off again over the past seventeen years. You can learn an awful lot about other people’s insecurities when you try to be honest. Lose the shame. Empower yourself. I’ve had people say the most ignorant, and painful things to me. “Does your husband still want to have sex with you?” Wow. And yes, all of the time. Although, I don’t remember ever talking to you about your sex life. I’ve also had friends who have wanted to see, learn more or who just make me feel pretty damn proud and awesome. One of the single most irritating things is when people use a rude, snarky tone and call it a “shit bag.”
I work in a children’s hospital as a child life specialist. I help explain procedures to kids and families, normalize the hospital environment through providing play, and provide distraction and support throughout the hospital admission, in a nutshell. One day, I walked up to two nurses sitting outside of a patient care area. I had an intern who was shadowing me to better learn the role of a child life specialist. One of the tasks assigned to her was to ask nurses to define medical terms. She asked these two nurses if they would help define a few medical terms. She gave them one that stumped them a little, they weren’t too familiar with it due to not working with that specific population. Next, she asked them to define “ostomy bag.” Both of these nurses looked at each other, smirked a little and in unison stated, “Shit bag.” My heart dropped. My stomach flipped. And my impressionable intern wrote down, “shit bag” in her notebook. I felt like a coward. I felt ashamed. I don’t want to feel that feeling anymore.
I wrote the following piece as a response to their insensitivity. I would want to know if I hurt someone, unknowingly. Really, what would be ideal is if everybody would have the same reaction that my family and close friends have. Specifically my three young children. It’s normal. Not a big deal. It’s all that they know. And they have always loved me wholeheartedly. So, here it is. My (lengthy)response to my bag being called a “shit bag.”
It’s not called a “shit bag.” Well, you can call it what you want to. That is, when you experience all of the pain, frustration, shame and uncertainty that comes along with having one. When your life gets altered for more than a few minutes or hours. Then, you get that small luxury. The tiny luxury of calling something that you actually have, on your body, whatever you want. You do know that this is not the result of an elective surgery, right? You should. Because when I was dying as a strong-willed, stubborn 18-year-old, you are the exact person that I feared. An insensitive, all-knowing, ignorant jerk. I get it. If I were your wife, your best friend, your sister, your daughter or even your mom, you would know better than to call it a “shit bag.” You would know to walk cautiously, talk sensitively and act sympathetically. You would remember how I looked when I couldn’t eat for weeks. When I had no quality of life. You would remember how I lost my spark, my smile, and my laugh in that hospital room. And you would have done anything to take away some of my pain. You would remember all that I have been through, all of these years. Seventeen years, to be exact. And you would be proud.
People say, “you always have a choice.” Well, I haven’t felt that way when it comes to this disease. Or maybe I’ve been forced to answer a multiple choice question when all I wanted to do was fill in the blank. Write my own answer. Miraculously be healed from my guts beating themselves up. Okay, so maybe I did have a choice. Die. Or live with an ileostomy. Or on another occasion, have shit coming out of my vagina. Or have a bag. A “saved-my-life” bag. That’s really what it has done. I didn’t bleed out, like others who waited too long. And as a result, died. Yes, died. You probably didn’t know that because I didn’t want to tell you. I didn’t want to console you. You haven’t earned my trust. If I want to call it a “shit bag,” then I can. And I do sometimes. The thing is, I can call it whatever I damn-well please because I have earned that right. Through failed surgery after failed surgery after failed surgery. And all of the painful recoveries too.
I have tried to be honest and open with friends and family who I value, love and trust. When people say unkind, hurtful, shame-promoting things, it causes me to put up a few walls or privacy fences. Outsiders. You can see in, but not all the way. You may hear the laughter and even smell the smoke from the grill. But, you have to earn your way into my backyard. All you have to do is genuinely care, show a little sympathy, not to be confused with pity, and bring your curiosity. I welcome your questions, your thoughts, and your opinions if they come from a place of love. Please don’t stare at me that way when I tell you. Don’t let your eyes go from looking at mine to looking below my waist. I can hide a lot of things, if I want to. Especially from people like you. I do it everyday. Because, in this world, we can be cruel and unkind and insensitive to people, especially when we don’t know what they have endured. Or we don’t understand. Or we don’t choose to understand. Or we don’t care. Just imagine me as your sister, your mother, your wife, or your favorite person in the whole world. Then, think what you would say and how you would say it.
I haven’t always been so confident and loud, but something changed in me. I rather unexpectedly and miraculously gave birth to these three precious, kind-hearted and fully accepting little sons. They have only known me one way, with an ileostomy, a bag. No other way. I am their mom who has loved them from the first glimpse of the positive pregnancy tests. I’m pretty sure that they would have accepted me, from birth, had a looked like a dump truck, a wicked witch, or a strange monster. Afterall, it’s not what you look like, it’s how you love. Kids get that, and they live that way, until we, adults, change them. I love my boys in a most enormous, breath-taking, go-to-great-lengths-to-protect them sort of way. They think I am pretty awesome, and that’s a big deal. The biggest deal. They say things bluntly, honestly, matter-of-factly, and innocently, like:
“Boys have a penis. Girls have a bag.”
I want to laugh and cry at the same time. It’s normal, universal to them. They don’t care. They don’t judge. They are patient and compassionate with me. They never have made me feel ashamed of something I didn’t really choose to have. They love me to the moon and back every single day of the week. And to all of the stars too. They accept me for who I am, not what I look like on the outside. They make me so proud that I made the choice to live. Truly live. With a bag.
It can be hard sometimes. Some days, I hate this bag. I blame this bag. I resent this bag. Some moments. Those moments don’t begin to compare to the gratitude, joy and love I embrace the rest of the time. Life is completely worth it. And if I can encourage you to think of a little boy’s mama or a friend that you love, before you speak and beg you to choose your words more gently, than it is worth it for me to put myself out there. My whole self. I am confidant that there are scared and insecure girls, women, boys and men out there. Wondering, hoping, praying that they will be accepted. Bag and all.
I happen to know these three spunky blonde-haired boys who would set you straight pretty fast if you tried to say any thing negative about their mama. Or her bag. And they’re only 6, 6, and 3 years old. You don’t want to get their daddy involved either. He happens to like me a lot too. He may just think I’m the most beautiful woman, inside and out, that he’s ever known. Bag or not.
You see, it’s never been about what I look like on the outside to the people who really matter. My dad sat next to me on my hospital bed and said it best when I felt completely defeated, exhausted and scared as an invincible teenager, “If somebody is not going to love you for having a bag, then that person doesn’t deserve to be a part of your life.”
I try to remind myself of this oddly disguised gift. A built-in people filtering system, installed numerous times by several of the kindest and smartest surgeons. It’s not Coach, Kate Spade or even Prada, it cost even more. I owe my life to this bag. I will have it forever. And most days, it’s for better. Not for worse. And even on those “worse” days, having people who care and authentically, whole-heartedly love me helps me get through. And reminds me that life will always, always be worth carrying an extra bag around.
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