A Different Kind of Story

What if you discovered that your most embarrassing secret, the one thing you’ve spent your whole life trying to hide from everyone, was the thing about you that had the power to help the most people? Would you continue to hide it? Or would you open yourself up to that chance?

I’d like to do something I’ve never done before on this blog. I’ve talked a lot about Crohn’s Disease and the negative associations that come along with a gastrointestinal disorder, but I’m only able to speak from my own limited experience. I’ve done my best to be open and honest about my illness, but I know that it is just one story.

That’s why I’d like to introduce you to Mackenzie.

A few weeks back I received an email from a girl going through a struggle that I didn’t even know existed. Every day she deals with something that most of us don’t have to worry about at all. Mackenzie was born with something called a urinary incontinence, also known as a giggle or laughing incontinence, which means that every time she laughs she also pees.

I get plenty of emails from all kinds of people dealing with all kinds of problems, medical or not, and the one universal piece of advice I can fall back on is to laugh. With my disease in particular it’s easy to find the humor in the situation, and I rely on that so heavily to get me through the bad days. In other areas of my life that I can’t easily see as funny, it’s still helpful to find some relief in laughter of any kind.

That’s what struck me immediately about Mackenzie’s email: I had no idea how to help. My biggest piece of advice, to laugh through the tough times, was the exact issue that was causing her pain in the first place. What would my life be like if I was afraid to laugh? How could I possibly know what she was going through and the strength it took each day?

But as I read on I realized that Mackenzie didn’t need advice. She needed a platform. So after several emails back and forth Mackenzie came to the very brave decision that she would allow me to write about her story for this blog. But personally, I think it would be better if she told it herself.

With her permission, I have included bits of Mackenzie’s first email to me. I don’t have the words to describe how much this story affected me, so I’ll let you read her words instead.

“Dear Shannon,
I have always liked the idea of writing to you ever since I first read your blog. I suppose it has taken me a while because I am worried that I might not be writing to you at all. I fear this letter because I might be writing to myself, too.

My name is Mackenzie. I am an eighteen year old student at the University of South Carolina. I am an English and Psychology major. I love microwave popcorn, old books, and the Spotify student discount. I wish that everyone knew about Carol Burnett and could wear Christmas sweaters all year long.

Also, I have laughing incontinence.

You are my first friend in college that I have disclosed that one detail at the end to. Does it stand out as much as I imagine it does? I suppose I set it up as a distinction, but I think that I have come to terms with having laughing incontinence as a distinct part of my life. I cannot control it. I cannot determine what it does or when it happens. Perhaps you can help me come to terms with the role of incontinence in my life, and how to accept the beauty of distinction amidst embarrassment?

This is hard already, but I am going to let it be. I will most certainly disclose more than I should, so forgive me for the inevitable lengthiness and awkwardness. I have to let this be hard, because then, it should be easier.

I have laughing incontinence, which is exactly what it sounds like. Every time I laugh, I pee myself. The irony of the humor and pain that sentence holds makes my fingers cringe as I write this. This condition certainly does not entail as much medical intrusiveness, dietary restrictions, and physical pain that Crohn’s Disease does, but I am sure that it can feel equally as lonely as it does for you on your tougher days.

For what I completely lack in relating to the medical strain, I take so much comfort in relating to your embarrassment. Please bare with me as I give you more details and backstories than necessary, but I am essentially unraveling this mess that I’ve kept concealed for so long from even myself.

When I was little I vaguely remember wearing pull-ups longer than most kids. In elementary school, the school nurse probably would not recognize me with blush-less cheeks and dry pants.

The pediatricians all told me to strengthen my bladder and Kegel muscles which I suppose I had never really exercised before. Perhaps my bladder had become lazy and entitled, thinking that it could just urinate whenever and wherever it pleased. If you have ever been assigned a bladder workout regiment, it entails stopping midstream and singing the ABCs, which is much more of a cruel deprivation than a strengthening exercise.

With undiagnosed laughing incontinence, the doctors tell you that you have a weak bladder, so you sing your little heart out every time you use the toilet but it never works. You start to believe that if your bladder is not weak, you must be.

Thankfully, my mom caught my heart from the melodies and kept scheduling appointments until we found the right doctor. Unlike the other doctors, she explained that the problem came from my brain and not my bladder. Every time I giggle, chuckle, crack up, or just laugh, my brain tells my bladder to pee, which honestly just sucks.

The amount and timing of the pee has an unpredictable nature. I can barely giggle to a small talk joke about the summer heat and that could unleash the floodgates. However, breathless, rich laughs always promise some escapees.

The doctor told me that she had two other female patients with this kind of incontinence. Like most girls with laughing incontinence, they were so afraid to laugh that they chose to live a life that only held darkness and sadness.

In those moments, sitting on the paper covered table alongside a clear toilet, I had to make a choice. Peeing myself nearly everyday, sometimes multiple times a day, chose me, but I could choose to laugh. I would choose laughing beside my childhood best friends when we horrendously failed to make waffles. I would choose laughing when my older sister exercised in a leotard to Britney Spears albums. I would choose laughing for no reason other than that it became a right that I fought for.

I am amazed at how you always choose optimism even when you are spending more time in the bathroom than you would like. With your example, I can choose optimism when I’m spending less time in the bathroom than I would like. This choice came with ease at that moment, but in the moments where I am put to the test I experience the shame that accompanies my decision.

Shame and I became closely acquainted, especially in middle school. My mom came home with an industrial sized package of urine pads. They are pads, not diapers, but they certainly make up for this noncommittal nature by being horrifically long and thick. I explained away this new addition to my everyday attire, pretending that I already had my period like my other friends, and that it just happened to last a medically impossible duration. I accepted that my butt would just appear larger in the center than the outsides, which is fine for someone without much of a butt, anyways.

Despite the aggravation of wearing an absorbent pillow everyday, they really made a difference. Still, there would always be one day a week amidst the perpetual giggles of middle school years that required lowering my backpack, wearing my jacket across my waist, or standing in a strange thrust position underneath the hand dryers.

I would tell myself that sometimes life makes you stand weird and that’s okay, but then someone might mention that it smells like pee at the lunch table, or I would leave a wet seat behind at my desk and allow another jacket to become a makeshift towel, or I had to make up an excuse to not go to a friend’s house after school, or I would feel childish, helpless, and ashamed, or I would cry. I would definitely cry.

High school was a little better. Middle school giggles subsided, but the shame increased. Freshman year P.E. meant worrying that everyone would notice that I wore giant pads that clearly showed underneath my underwear in the locker room each day while I noticed the lacy underwear that the other girls wore that I never could. Friends would joke about the one time that they peed their pants after something funny happened, and everyone would laugh at the cute and quirky story. I would change the subject or leave for the water fountain, terrified that someone might ask for my “last time you peed your pants story” only to find out that it was earlier that day.

In my summers, I would spend a couple weeks working at a camp. Water recreation day prevented me from wearing my pad. Well, except for the instance I forgot and it filled up and spilled blue beads and foam from my ridiculously sagging pants. You live and you learn, I suppose. Unfortunately, not wearing a pad did not mean that I would not laugh. Standing outside of the small group that I taught, I giggled and left a puddle on the floor that I wiped with my shoe before abruptly leaving for the bathroom, praying that no one saw the trail on my leg.

I hate my incontinence. I hate feeling betrayed by my body. I hate being incapable of a feat that three year olds learn. I hate that no matter how many times I go to the bathroom, it still happens. However, when I let the hate grow, it always captures my laughter, too.

Like the pee stains, the hate goes away. I laugh again and remember why joy is more important than shame. There are always so many reasons to be thankful for incontinence, too. I value laughter so greatly because I know what it means to long for it.

I have best friends who know and love me regardless. I have never known a better example of selfless friendship than seeing a friend silently wiping the floor with a paper towel while you run off to discreetly change your clothes in the bathroom. As they say, a friend who holds your pee-filled paper towel holds your heart. (Obviously, nobody says that, but it is nevertheless true.)

I learned humbleness in a very potent way, because if you ever feel like you are better than someone else, pee all over yourself in front of them and then see how you feel.

Incontinence is embarrassing, lonely, and miserable, but I refuse to let my life be.

I just started my freshman year of college. I have to hide a stash of pads in my room. I cannot spend four dollars just to wash my favorite pair of jeans that the pad failed to protect. I don’t have my friends around who know and don’t mind letting me borrow their spare shorts when I need them. I endure conflicting excitement and shame regarding my incredible new friends and the accompanying laughter. I am out on my own as a woman who pees her pants daily, which hardly sounds like a woman at all.

I learned in my AP Biology class senior year that there is an unacknowledged war of trees. They grow beautifully above with branches stretching to catch the wisps of clouds, but the roots beneath desperately battle for every nutrient and raindrop that seeps into the decay of soil. I am amidst the war of trees. I battle amongst decay for life everyday as my laughter grows. Still, I am growing, so this must be a war that I am winning.

Thank you for everything, especially the laughter.”

So what if your biggest secret had the power to help someone else? Do you give it up to the world and hope for the best? Do you try to make the most of the burdens you have been given?

When I suggested to Mackenzie that she use her gift of writing to reach out to others about living with an incontinence she was wonderfully open and equally terrified. She told me how vulnerable she felt, and how scared she was to let me post this. And then she did it anyway.

In my last email, she signs off with this:

“My heart is full. Let’s answer those what-ifs together.”

If you would like to contact Mackenzie you can reach her at mackenziepbailey@gmail.com or through her instagram, mackenziepbailey. If you have an email you would like me to receive you can reach me at happygirlsguide@gmail.com or through my instagram, barry_happy. A huge thanks to Mackenzie for giving us a different kind of story.

 

3 thoughts on “A Different Kind of Story

  1. This was a very eye-opening story, thank you so much for sharing Mackenzie! Everything I’m trying to say, to tell you how brave you are and how much I admire your honesty, sounds fake but I want you to know that I feel it nevertheless.

    About Shannon’s question:
    Very recently I told my parents my biggest darkest secret about how my older brother “sexually abused” me about 10 years ago. I use quotes because it just sounds wrong. They completely freaked out and lost all respect for me and think I’m saying it for the attention. Some much worse stuff happened related to that but I’m not inclined to say it. (I’m completely safe though; I haven’t been “abused” in a decade.) We have decided to completely ignore it for the rest of my life, because he’s coming home from college in about an hour.
    The only way I will ever be able to tell my story is through anonymous internet posts like this. It’s sad to have a problem even your parents are ashamed of or just flat out deny. It reminds me of what doctors used to say before I was diagnosed with IBS and what it sounds like you and Mackenzie went through as well.

    Like

  2. Mack, if you lived closer to Chapel Hill NC, I would offer you a job. Or more likely, I’d suggest you get your college credit by remote exams to avoid having to deal with the cattiness of college life and I’d pay your tuition.

    I have an invisible illness, I don’t have long to live, and I want to use up my savings travelling some of the country while I can. If you are ablebodied enough to drive and be my aide and friend and cheerleader and guarddog, I would definitely want to travel with you. In fact, I am adding notes to myself that when I run another job ad, I will mention giving preference to those who suffer with an invisible illness or trauma-induced phobias because I have a boatload of my own that I will want you to protect while I will do what I can to cover you.

    Like

  3. Truly, your writing was so beautiful, Mackenzie! I am so blessed to read such writing from a person whose heart is so filled to the rim with joy and hope despite your struggles. God bless!

    Like

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