Water is wet, and I’m disabled.
Emma is one of the oldest and most treasured members of the BTWF family. On Monday, she gave a speech at her former community college and we thought it was such a special, brave, inspiring, and important story we wanted to share it with you here.[Note from Emma: I give you full permission to laugh at my inappropriate humor, because I laugh at myself all the time. If I go **there,** you can laugh! My humor is a big part of who I am.]
Hi! I’m Emma! Water is wet, and I’m disabled.
People think disability is inherently bad, or makes life less than. I’ve been through a lot of struggles and I definitely have a body that doesn’t always work the way I want it to, but I’d argue the life I live with disability is way better than a life without.
I know the one question you’re probably all thinking but are too afraid to ask, which is: WHAT HAPPENED TO YOU?
Basically, I was born 14 weeks prematurely at two pounds, one ounce, and more or less came out looking like an underdeveloped alien child – my entire head black and blue with bruises, and my hands so small that they literally wrapped around my parents’ fingers. I sustained a brain bleed as well, so both of those factors together basically made for a perfect storm of spastic quadriplegic cerebral palsy, which is a “non-progressive” brain injury acquired at birth affecting movement (and quite honestly, the “non-progressive” part is super misleading). All four of my limbs as well as my trunk sustained some degree of paralysis due to (very, very) tight muscles and spasticity originating from the brain.
Obviously there’s no rulebook for how to raise a child with a disability, particularly when your parents were expecting a perfectly healthy child one second and then are given a laundry list of things I would never do the next (they may have been right on some things, but I proved them wrong in others). I spent my first three months of my life in the hospital. That wasn’t even taking into consideration the fact that I had two life-saving surgeries on my intestines when I was only days old to remove dying tissue. Between my birth and those surgeries, I was touted around the NICU as the miracle baby. Although it was pretty obvious I wouldn’t walk, other milestones involved the watch-and-wait approach – for instance, my first words were a MASSIVE sigh of relief for my parents.
To break it down a bit more (and with some humor), my CP affects me in many ways. From the bottom up:
Obviously, I use a power wheelchair. I don’t walk (wooo captain obvious), and require a lot of help just to move normally. If I were to face plant onto the floor right now, you’d have to call life alert, or someone who is physically able to move me – FALLEN AND UNABLE TO GET UP. There’s a moral to this story, folks: when your friend is trying to lift you into a car in the Cabella’s parking lot and is very clearly struggling, don’t be that a-hole that literally does nothing but stare out your car window as their car is parked next to yours for an uncomfortable amount of time and drive away. (This actually happened by the way.) By no means am I asking for a complete stranger to physically help, but I would hope that they would have enough common sense to actually do something or ask if I’m okay in the event they witnessed an emergency and no one else was around, so I’m not stuck on the ground for all eternity.
Moving to the trunk/spine, it’s very hard for to lean forward on my own and sit independently. Most of the time, if I were to sit in a regular chair without support, I’d turn into a collapsing jenga tower within ten seconds—also known as a fallen-and-unable-to-get-up situation. Unless I work really hard at it in therapy—and even then, it is very tiring. My entire spine is also filled with titanium, which makes me pretty bionic. For those wondering: no, I’ve never set off metal detectors—how I pulled that off, I have no idea.
My arms is where it becomes a little less obvious. They move, but my arm movement is still limited in places. To name a few things, I can’t lift more than five pounds. The dystonia in my left arm makes it frequently lock up and uncontrollably flail. I don’t write by hand pretty much at all because I don’t have the stamina and I write like a two year old. My fine motor skills are sorely lacking—in other words, don’t trust me with a pair of scissors because it won’t end well. However, I am able to do some things rather well to adapt. I type pretty fast and I’ve made it a goal of mine to write a memoir (in fact, I’ve already started). I’m also pretty awesome at driving my chair!
One area of functioning that came unscathed is my speech and cognitive function, which is totally awesome because it lets me be up here to talk to you all and make a bunch of insensitive jokes about myself.
Now taking all of this into consideration, how did my parents actually raise me?
As normally as possible.
As a kid, I was obsessed with Barbies, Britney Spears, and all things pink. I even got to play in the mud (for real). We took an awesome vacation to Florida when I was five—and they let us cut in line because hello, Cripple benefits. My parents treated me like anyone else (and they still do!). I was sort of taught to laugh at myself from the beginning, and I got my nickname of Cripple after literally being called a Cripple by a Walmart employee for using a scooter when I couldn’t bring my wheelchair (you can’t make this stuff up). I was never in a different school – there was never any doubt that I couldn’t be academically where my peers were.
What was different, though, was the fact that my family’s life pretty much revolved around keeping me healthy—and for that reason everything wasn’t always inclusive.
A lot of the things I remember about my childhood involve the hospital. Clinic days were family affairs. My mom would pull my brother out of school from time to time and he’d get to play the Nintendo in the waiting room, and I would see my doctors. For him, totally the BEST DAY EVER, but for me I was over the whole thing because I’d constantly get poked and prodded—x rays, range, pump refills and other completely boring sounding activities. My surgeon would tell my mom the graphic details of how I was getting cut open next, and I didn’t understand any of those discussions apart from the whole “you get to go to sleep and have a nice nap” at that age.
I still hated it, though. For years I’d have to get held down in the OR so nurses could put that terribly smelling mask over my face and put me out. To date, I’ve gone into the operating room around 30 times and been hospitalized close to 20 times, many of those for long extended periods, which is always fun! (Please note the sarcasm.)
I feel like a lot of people with disabilities or chronic conditions don’t talk about the trauma that can come with their treatment, perhaps because of stigma and the need to “be strong.” My parents made some tough, tough decisions, particularly when it came to my surgical treatment. I hated every one and didn’t understand why I had to go through them, but for the most part there was considerable benefit. While almost every surgery I’ve had has been successful, there was one that was a colossal failure – that was my baclofen pump.
Baclofen is an anti-spasmatic, most commonly prescribed to treat spasticity in cerebral palsy patients. My PM&R at the time convinced us that by surgically implanting this device so that the medication could run through my spinal cord, I’d have less spasticity, less pain, require less surgeries and therefore have a better quality of life as opposed to oral baclofen. My parents made the decision to go through with the surgery, thinking it would be the best thing for me. We released my hamstrings a year later, but all things considered I was doing well.
Until I wasn’t.
I was in second grade, and at first I just started falling asleep in class. I can recall getting incredibly drowsy and thinking to myself, “Why am I tired? I went to bed on time last night.” Eventually it escalated into vomiting that was passed off as the flu. One thing turned into another and I became unresponsive, my pupils so dilated that the ER team thought I had died. My primary doctor suspected overdose but my PM&R was in denial about the whole thing, which led to a longggg rabbit hole of hospitalization as I fought for my life for a couple of months. At one point, it got so bad that doctors told my parents they’d be better off bringing me in their own car to the hospital, because the ambulance wasn’t going to make it in time.
This was TRAUMATIC.
I didn’t even understand what the word overdose meant and yet you could definitely feel the weight of the situation even as an eight year old. Tests showed nothing, and the doctors were dumbfounded. Meanwhile, the catheter inside my body was trying to kill me ‘round the clock. I had become pretty desensitized to hospitals even before this happened, but I absolutely hated that I was so sick. I began to question a lot of things, like “What do other kids think of me?”
Eventually the straw broke and and my mom drove me to Gillette. I was violently puking in the back of the car, and she carried me through the front doors begging for help. We took the pump out, I still had to go through an extensive inpatient recovery period. I was so traumatized by everything that had happened that I began to hide from everyone: my family when they would visit me, other kids who would try to talk to me, nurses when they would round.
It’s an actual miracle that I survived it and I should absolutely be dead – but it definitely had a lasting impact. I would scream and cry constantly at home especially during therapy sessions, and my parents chalked it up to being “lazy.” The truth was I was just DONE with everything at that moment, was reliving trauma, and I wanted so desperately to be a normal kid. I’d get hit with flashbacks on the way home from school and be in tears, finally realizing the gravity of what I had gone through.
I’ve definitely learned from all my time in the hospital to not take anything for granted, as cheesy as it sounds, and I was forced to grow up faster than most kids. We always made the best of it, though, and laugh at the ridiculousness of the situations I was put in. My brother would mess with me on more minor surgeries, like when he literally brought his leftover pizza and taunted me with it while I was waiting (he got kicked out and the revenge was sweeeet). I’ve been visited by super creepy Easter bunnies, played Mario party while my brother gave me a broken controller (and then blamed it on the meds), and have had laugh attacks from Versed that are phenomenal.
Having opportunities to be like everyone else was one of the few things that made me happy. Anyone here remember how gym class made their lives hell? I actually really enjoyed it at times, particularly in elementary school, because it was inclusive. I got to try almost everything, even if I absolutely sucked (disclaimer: I sucked). I remember actually getting a chance to try to hit a T-ball, which I failed spectacularly at but I would have an absolute blast and all the teachers would woo and coo like I was their own child.
Enter the hell that was middle school.
In middle school gym, all of the opportunities from previous years were taken away. In middle school, it slowly became less about fun and more about brisk exercise. I’ll never forget the day that as 6th graders, my teacher dropped the ultimate bomb that signified, at least in our minds, we weren’t kids anymore: Running the mile around our school gym.
You should have seen all the students shudder. Break out in cold sweats before it even started. Complain to teachers that they couldn’t do it, that it would be too hard. Meanwhile, what was I told to do?
Roll the mile. I kid you not.
While everyone else in the class was in complete agony looking like they were going to drop dead at any moment, all I had to do the entire time was drive around the room. It’s even more ridiculous when you consider the fact that I was being timed. “Look Mr. Smith, I shaved 10 seconds off my time by going full rabbit speed instead of part rabbit speed – I am exhausted!”
Unfortunately after 7th grade, I was pulled out of gym due to the fact that I was having some pretty serious health issues. I never had an opportunity again through my school to participate like I did when I was younger. It’s unfortunate, because I feel like there’s opportunities for everyone—disabled or not.
But summer camp made up for where my school failed. It was a camp for disabled kids, and it was an absolute blast. They had everything you could ever want—a pool, horses, a gym where I could do more than just roll the mile. It was entirely accessible. I went for years, eagerly anticipating when I would be able to get away for a week and be a “normal kid.” My cabin mates would stay up all night, comparing literal scars and stories from our childhoods, and laughing until we cried. I’m still friends with many of them to this day, and those are some of my fondest memories from when I was younger.
As I got older, I went through something a lot of adolescents do—not knowing where I fit in. I basically had a massive epiphany my freshman year filled with repressed memories from childhood and all the #$!% I’ve been through. I started to hate myself, questioning every “what-if” imaginable. How could my family love someone in a wheelchair, who needs constant help from others?!
To this day it’s still one of my biggest struggles, but I have an incredible support system with the best friends anyone could ask for that I can say with utmost certainty would not be in my life if I were able-bodied. Had I not met my closest friends, there’s a lot that would be.. different. Both in my life and theirs.
Just to prove my point, I want to show you all something:
And yes, that was what you thought it was.
When I was younger, I truly thought that I had no one to call a friend – no one that had my back. I had no idea what I was going to college for and I had no idea what was in store for me as far as my health. Although there’s been many, many, MANY bumps in the road and I’ll continue to go through things like surgeries, I wouldn’t imagine my life any other way. I couldn’t imagine it any other way. Next year, I’ll have my BSW and hopefully, my dream job.
This diagnosis brought me friends. It brought me my passion for this field. It’s showed me what it means to laugh at yourself, what it means to persevere, and what it means to find joy in every moment.
Even if you don’t have cerebral palsy, I challenge you to do the same.