The truth shall set you free

It's been quite a while since my first post. I've wanted to write this one for months, but life has gotten in the way.

More honestly, I've been going through some things, and I've struggled to find the words.

I've never been very good at sharing my struggles. My natural instinct is to bottle everything up, put on a brave face, and tell everyone I'm fine—even when I'm not. Ever since my accident, I've felt this overwhelming need to protect the people around me from what I'm going through. I've spent the last 22 years trying to make everyone else comfortable with my situation, and if I'm being honest, it's exhausting.

As I sit here writing this, I'm tearing up because I've worked so hard to convince people that everything is okay.

I've wanted life to feel normal again. I've wanted people to see me as the same Suzanne I was before my accident.

But the truth is, I'm not the same person.

Not even close.

And maybe that's okay.

This post is different from anything I've written before. It's my truth—the messy, uncomfortable, sometimes ugly truth about what life with a spinal cord injury is really like. There are parts of this story that aren't pretty. In fact, some of them are downright gross.

So consider this your warning.

If discussions about bodily functions, medical procedures, and the less glamorous side of disability make you uncomfortable, now might be a good time to turn back.

For everyone else, welcome to my reality.

As I’m about to turn 40 and have recently marked the 22nd anniversary of my accident, I’ve been doing a lot of soul-searching. The past few months have been rough—an emotional roller coaster that feels never-ending.

When I first got hurt, I had no idea what my future would look like. I had this strangely rosy outlook, like everything would somehow be okay. I figured I would just sit more than everyone else.

What’s the big deal, right?

God, I wish that were the case.

What I didn’t realize then is that when you damage or sever your spinal cord, you don’t just lose the ability to walk or feel below your injury level. You also lose control of your bladder and bowels. Some people live with debilitating back or neck pain. Others deal with leg spasms that can knock them right out of their chairs.

Thankfully, I haven’t had to deal with many pain issues until recently, and even that is mostly my shoulders finally protesting decades of wheelchair life. I also haven’t had severe spasms, although those have started creeping in a little more lately too.

But let’s get back to the bladder and bowel situation.

Take a moment and really think about what it would be like to have no control over those two things.

Sounds bad, doesn’t it?

Well, it is.

And trust me, your imagination can’t even come close to understanding just how shitty that part can be.

Pun absolutely intended.

Let's start with the bladder because it's probably the easier of the two topics to talk about. And yes, I realize that's setting the bar pretty low.

Every spinal cord injury is different, but for most of us, going to the bathroom isn't as simple as...well...going to the bathroom. We rely on catheters to empty our bladders.

When you're first injured and in rehab, the nurses handle everything. Every two to three hours they come into your room, glove up, clean everything with what I lovingly remember as "that red crap," insert the catheter, drain your bladder, measure the output, remove the catheter, clean you up, and move on to the next patient.

The first few times, it's mortifying.

Then something funny happens.

You completely lose your sense of modesty.

After enough doctors, nurses, therapists, and nursing students have seen your naked butt, you almost stop caring. Besides, when you can't feel anything down there anyway, you quickly realize your dignity left the building a long time ago.

Eventually, rehab teaches you how to catheterize yourself.

For most men, this is fairly straightforward because they can actually see where the catheter is supposed to go.

For women?

Well...let's just say ours is more like a blind treasure hunt.

You use your fingers to figure out where your urethra is because you can't exactly see it while sitting on a toilet.

And let me tell you. It’s freakin' hard to find.

So congratulations! You've finally mastered catheterizing yourself.

Woohoo!

Except...there's another prize waiting for you.

Bladder infections.

Every single time you insert a catheter, you're introducing a foreign object into your body, which means bacteria have another opportunity to sneak in. The biggest problem for those of us with spinal cord injuries is that we don't get the same warning signs everyone else does.

Most people know they have a bladder infection because it burns when they pee. They call the doctor, get some antibiotics, and usually catch it before it gets too bad.

I don't get that luxury.

Since I can't feel anything from the waist down, I usually don't know I have an infection until it's already in full swing. My urine turns cloudy, it starts smelling awful, I find myself catheterizing every hour because my bladder won't stop spasming, and then the fever hits.

By that point, I'm down for the count.

Over the past twenty-two years, I've averaged about three or four bladder infections every year, and each one usually knocks me out for three to five days.

To make matters even more frustrating, my insurance company refuses to cover enough catheters because they're considered disposable. They'll happily pay for "durable medical equipment," but apparently preventing infections isn't high on their priority list until I meet my deductible.

Makes perfect sense, right?

Thankfully, I'm one of the lucky ones. I've never had a kidney infection.

That may not sound like a big accomplishment, but kidney failure is one of the leading causes of death for people with spinal cord injuries. Other major causes include pulmonary embolisms—blood clots that travel to the lungs or heart—which I've already experienced once, and infections caused by pressure sores.

So while people often assume the hardest part of paralysis is not being able to walk, for many of us, it's everything else that comes with it.

When I first got hurt, my bladder actually behaved pretty well. I'd have the occasional accident, usually if I'd been drinking alcohol, but for the most part it cooperated.

Unfortunately, just like the rest of my body, it seems to have gotten crankier with age.

Over the years, my bladder has deteriorated to the point where it holds very little, and now I have accidents two or three times a day.

Yep...every single day.

Which brings me to something I never thought I'd admit to the entire internet...

I don't buy underwear anymore. I have absolutely no use for it.

Instead, I'm pretty sure I'm single-handedly keeping Target's adult diaper department in business.

And now, my life quite literally revolves around my bladder.

I can't visit someone's house unless I know I can get into their bathroom—and if you've ever paid attention to bathroom doors in older homes, you'll know that about 95% of them seem to have been built with wheelchairs specifically not in mind.

If I ride in someone else's car, I bring a waterproof bed pad to sit on...just in case.

My mattress has a waterproof cover. Then another waterproof pad on top of that. I also wear a diaper to bed.

And somehow...I can still manage to soak everything. It's actually kind of impressive when you think about it.

I rarely wear the same pair of pants twice because there's a pretty good chance I've peed on them. Honestly, I don't wear jeans or pants very often anymore anyway. If you've ever tried pulling wet jeans down while sitting in a wheelchair, you'll understand why.

That's why you'll almost always find me in a dress.

People probably think I'm trying to look cute.

Nope.

I'm just making diaper changes easier.

Never in a million years did I imagine I'd be almost forty years old, sitting at my computer, writing a blog post about changing my own diapers.

Life has a weird sense of humor. And if you've ever wondered why I don't want kids...

Well, let's just say I'm already changing enough diapers for one lifetime.

If I'm distracted and forget to put on a diaper, you can usually tell exactly where I've been in my house. Seriously. There may or may not be a little pee trail leading from one room to another.

Classy, right?

The thing is, I have to catheterize every one to two hours to keep my bladder empty. If I lose track of time, get caught up watching TV, or decide, "I'll go in just a minute," my bladder usually makes the decision for me.

Sometimes I get a little warning.

My right foot will start twitching or spasm a bit, and over the years I've learned that's my body's way of saying,

"Hey...you might want to find a bathroom."

The problem is, most of the time that warning really means...

"Congratulations! You're peeing RIGHT NOW."

Thanks for the heads-up. Eye roll.

Every day I take medication that's supposed to help my bladder hold more urine. Well...not exactly "hold." What it actually does is try to calm my bladder down so it doesn't go into full panic mode every time a few drops of urine collect inside it.

I have what's called a neurogenic bladder. Basically, my bladder and my brain no longer communicate very well. My bladder likes to throw little temper tantrums by spasming long before it's actually full.

Unfortunately, my insurance company doesn't think these medications are important enough to cover, so every time I visit my urologist, she loads me up with sample boxes like she's sending me home with party favors.

Thankfully, she understands.

However, the pills don't seem to understand. They've slowly become less and less effective over the years.

When the medication stopped doing its job, my doctor suggested Botox injections.

Yes...Botox. In. My. Bladder.

Who knew that Botox wasn't just for wrinkles?

The injections work by temporarily paralyzing the bladder muscle so it stops spasming every five minutes.

For most people, the treatment lasts somewhere around eight or nine months.

For me? About two. Maybe three if my bladder is feeling generous. Because apparently my body didn't get the memo about averages.

The first time I had the procedure, I was taken to the hospital and put under anesthesia. They insert a tiny camera and a long needle through your urethra to inject the Botox into different areas of your bladder wall. For people who can actually feel that part of their body, I imagine it's pretty unpleasant.

Ironically, the worst part for me had nothing to do with the procedure itself. It was the IV. I absolutely hate needles, and the poor nurse had the hardest time finding a vein. She kept digging around in my arm while I got progressively paler and closer to passing out.

Then they slapped one of those ‘Fall Risk’ hospital bracelets on my wrist.

Nothing says "living your best life" quite like accessorizing with hospital jewelry.

Thankfully, insurance eventually figured out that paying for anesthesia was a little unnecessary for someone who can't feel anything down there. So now I have the procedure done right in my doctor's office. It takes about thirty minutes.

I wheel in. She does her thing. I wheel out. Easy peasy.

Well...mostly.

The rest of the day usually involves cramping and some bleeding, but about a week or two later, the magic starts happening.

And let me tell you...it's glorious. For a little while, I almost feel like a normal person again. I can make it through dinner without constantly wondering where the nearest bathroom is. I can go shopping without mentally mapping out every accessible restroom in the building. I can actually leave the house without packing enough supplies to survive a natural disaster.

For those precious few months, I remember what it feels like not to constantly think about my bladder.

It's freedom.

Then, just as I start getting used to that freedom, the Botox wears off. And just like that, I'm back to being a full-time pee factory.

I haven't had Botox since last July because, honestly, I don't think it worked. Either my doctor missed some spots, or my bladder has officially decided it's immune to Botox.

I'm really hoping it's the first one.

The problem is, I haven't been able to find out.

I'm not working right now, so I'm on insurance through the marketplace, which comes with a lovely $7,000 deductible. The Botox procedure costs around $2,600 out of pocket, so I've been putting it off until closer to my wedding. If I'm lucky, I can time it just right and only have to pay for the procedure once before my insurance resets.

So that's my bladder. And believe it or not, that's only one small piece of what life with a spinal cord injury looks

like.

Now we get to my absolute favorite topic in the entire world...poop.

I'm kidding. Obviously.

When you become a paraplegic—or a quadriplegic—you also lose control of your bowels. And during rehab, you're taught a new way of getting your body to cooperate called a "bowel program."

In theory, it sounds simple enough. In reality...not so much.

I'm sure there are plenty of people with spinal cord injuries whose bowel programs work beautifully. I am not one of those people. If I'm lucky, I go once a week, and more often than not, it requires alcohol to get things moving.

I know, this is probably the strangest blog post you've ever read.

But I promised I'd tell you the truth. The whole truth. Even the really gross parts.

When I was in rehab, they taught me all about bowel programs. The nurses showed me how to use enemas and suppositories and told me to drink lots of water and load up on fiber.

Sounds simple enough. Except drinking more water isn't exactly ideal when you already pee on yourself all day long.

And fiber?  I've taken enough fiber supplements and Miralax over the years to stock a small pharmacy, and instead of helping, I've managed to end up in the emergency room twice because I got so backed up.

Let me tell you, there's nothing quite like getting an enema in the ER. If you've never had one, congratulations. I sincerely hope you never do.

They basically insert a hose where the sun doesn't shine and clean everything out.

Ten out of ten, would not recommend.

So, if you're keeping score at home, my bowel program doesn't really exist because...well...it doesn't really work.

Instead, I'm usually just walking—or should I say rolling—around completely full of shit.

Literally.

Ironically, the one thing that works most consistently for me is alcohol. I'm sure every gastroenterologist reading this just gasped.

I'm not recommending it as a treatment plan. I'm simply telling you what works for my body after twenty-two years of trial and error.

But we still haven't gotten to the best part about not having control over your bowels…the accidents.

Oh yes. Shitting your pants.

Have you ever seen that old Kmart commercial about "shipping your pants?" If you haven't, do yourself a favor and go watch it. I'll wait.

https://www.youtube.com/watch?v=2xwUuSM06xQ

Wasn't that a nice little break from this completely disgusting blog post? Unfortunately, actually shitting your pants isn't nearly as funny as that commercial.

And here's the part most people don't realize...it happens to everyone with a spinal cord injury.

For me, it probably happens four or five times a year. Now, four or five times doesn't sound like much. But let me ask you this...when was the last time you pooped your pants?

Exactly.

Those are the days that completely derail me. The embarrassment, the cleanup, the frustration—it all piles on at once.

Those are the days I head straight home, climb into bed, grab my dog, and decide the rest of the world can wait until tomorrow. Because sometimes, after a day like that, cuddling with your pup is about the only therapy you need.

I didn't write this blog because I want you to feel sorry for me, and I certainly didn't write it to throw myself a pity party. I wrote it because when most people look at me, they think the hardest part of my life is not being able to use my legs.

And honestly? They're wrong. Sitting all day isn't the worst part. Not being able to walk isn't even the hardest part anymore. It's everything else.

It's the bladder accidents. The bowel accidents. The infections. The medications. The insurance battles. The planning that goes into every single outing. The mental gymnastics of constantly asking yourself, "Where's the nearest accessible bathroom?" or "What happens if I have an accident while I'm here?"

That's the part nobody sees.

People tell me all the time, "You're such an inspiration." And while I appreciate the compliment, they're only seeing the version of me that I choose to show the world. They see me smiling. They see me laughing. They see me traveling and living my life.

What they don't see is that I may be sitting in my own pee at that very moment, desperately hoping I can make it home before anyone notices.

If I went home every time I had an accident, I'd never leave the house.

For the past twenty-two years, I've felt this overwhelming pressure to be "the happy girl in the wheelchair." I've worried that if I wasn't smiling or making jokes, people would think I was bitter, angry, or unable to cope with my life.

So I smiled. I cracked jokes. I told everyone I was fine. Even when I wasn't.

The truth is sometimes I don't cope very well. Sometimes I get overwhelmed. Sometimes I cry. Sometimes I shut myself away from the world because I simply don't have the energy to pretend everything is okay.

For a long time, I thought admitting that made me weak. Now I realize it makes me honest. Maybe that's what

I've finally learned after twenty-two years.

I don't have to spend my life making everyone else comfortable with my disability. I don't have to pretend that everything is okay all the time. I can be grateful for the life I've built while still admitting that some days are really hard. Both things can be true.

So this is me, taking off the mask. Not because I want sympathy. But because this is my life.

The funny parts. The embarrassing parts. The heartbreaking parts. All of it.

And from now on, that's exactly who you're going to get.

#disability #paralysis #paraplegic #neurogenicbladder #incontinence #wheelchair #overactivebladder