What My Life With Chronic Pain Looks Like

Imagine waking up one morning, but before your feet even touch the floor, you can feel pain radiating from your hips and into your lower and mid back. You didn’t do anything differently the day before. You didn’t lift something too heavy or strain a muscle while exercising. This is just your normal. No amount of Advil, Extra Strength Tylenol, or deep breathing can ease the dull, yet persistent ache you feel throughout your entire body. As you surrender to the realization that today will be a difficult day pain wise, you get up, knowing that you can’t stay in bed all day, even though you’d prefer that over living in the hell that is chronic pain. You stand up, and while that feels like a feat in itself, the true test will be attempting to move.

You move your hand along the mattress and then transition to trailing your hand along the wall in order to make it to the bathroom, shuffling your feet slowly and cautiously. You do this because of how uneasy you feel. However, you know in the pit of your stomach that simply placing your hand against the wall won’t prevent you from falling due to your already unsteady balance. Right when you make it to the bathroom door, there is a millisecond when you know what’s coming. You see it play out as it has so many times before, but there is nothing you can do to stop it.

Your breath catches in your throat. As you fall, your arms shoot out in front you, trying to grasp onto a chair, a door handle, anything to prevent you from going all the way down. But your hands come up empty. You hit the floor, falling back-first into the door jamb. The breath is knocked out of you, there is a shooting pain coming from your hip joint, and you want to cry out. You open your mouth. Just as the darkness of early morning envelopes you, so does your own silence.

With shaky hands, legs that feel like jelly, and tears streaming down your face, you turn onto your hands and knees and push up with as much strength as you can muster, using the stability of the wall near you to stand back up. You’re standing again. You feel steady. But you know, in the back of your mind, it’s only a matter of time until it happens again. Until your body decides to let you down and you fall, again.

And yet, that moment, that moment of falling again and experiencing a pain that radiates like fire through your bones, that moment has not yet arrived. There is relief in the continuous shallow breaths you take as your world comes into view again. Your world is one of never-ending pain, but it is also one of gratefulness. Gratefulness towards the boyfriend who offers you his arm for support. Gratefulness towards the best friend for consciously slowing down her pace so you don’t feel left in the dust. Gratefulness towards the body that, no matter how painful, is still moving…still allowing you to stand back up, just one more time.

Learning to Drive With a Disability

As I was entering my teenage years, my parents and I were unsure whether I’d be able to drive a car. However, as with most things in my life, I knew I wanted to drive a car, and I was going to do anything I possibly could to make that happen.

While I didn’t drive a car until I obtained my permit, I was driving as early as 5 years old. I used to drive my Barbie Jeep around and around my neighborhood for hours on end. I’d turn on the little Barbie radio in the Jeep and “floor it,” flying down the sidewalk in my hot pink Barbie Jeep. As I got older, my Barbie Jeep transitioned to a go-cart and eventually a four-wheeler, but the go-carts we had were always my favorite. I know I likely drove way too fast, but I remember my neighborhood used to say that they always knew when I had my go-cart out because they’d hear my laughter and screams all the way down the block. Therefore, when I eventually got behind the wheel of a car, I had years of driving practice already. It’d be a piece of cake, right? Not quite.

I have spastic diplegia cerebral palsy, meaning my CP primarily impacts my legs and causes them to be incredibly stiff. Due to the stiffness of my legs and because I knew that my legs had a tendency to involuntarily shake if my foot was placed in a particular position (called clonus), I was pretty nervous about learning to drive a car. I didn’t know if I’d be able to move my foot from the gas to the brake quickly or easily enough. I also didn’t know whether my legs would become tired quicker due to having to be flexed when using the gas pedal and brake pedal. I had been told by my physical therapist at the time that there was always the option to utilize hand controls to control the gas and the brake as opposed to using my legs. However, I also knew that I wanted to do my best to drive just like everyone else.

A benefit I had when learning to drive was the fact that I lived in a small town. Because of that, I practiced driving on dirt roads, empty back roads that hardly had any traffic, and through town where the speed limit was only 25 miles per hour. Typical kids learning to drive might have been frustrated by this, but I was not. I wanted to become as comfortable driving on country back roads as I could. In order to test my response time, we’d be driving around and my mom would say “deer” (proof that we lived in the south), and I’d pretend I saw a deer in order to practice slamming on the brakes. We learned pretty quickly that I had no problem moving my right foot back and forth between the brake and the gas (which was a major relief on my part because I didn’t want to have to utilize hand controls).

The most important thing for me when learning to drive was taking it slow. Initially, due to my own fears, I drove really, really, really slow, but that changed as I became more comfortable. Once I got my permit, took driver’s ed, and accrued a certain number of driving hours, I was ready to take the driving aspect of the test to obtain my license. And despite all the practice I had, I was completely terrified.

When I took the driving test with a woman from the DMV in the passenger’s seat, initially everything was fine. However, within a few minutes my legs started shaking so badly that it was difficult to keep my foot steadily on the gas. The DMV woman noticed the shaking and said, “Why are you shaking like that?” I responded, “I shake when I’m nervous,” not wanting to bring up my disability for fear of her using that against me when determining if I passed or failed the test. Upon hearing my response, she asked me to pull over so I could “compose myself,” though I knew that no amount of sitting still would prevent my legs from shaking. Eventually, the shaking lessened to the point where I got back on the road and completed the test. Once we returned to the DMV, the woman’s response wasn’t what I was expecting. She said, “You almost didn’t pass,” as opposed to, “Congratulations.” Looking back on it now, I still feel like she was just overall skeptical about my ability to drive a car.

Because of my disability, learning to drive wasn’t just about getting my license and having a car to drive. It was so much more than that. It meant independence. It meant feeling included as a functional member of society. But more than anything, it opened so many doors in my future. There have been a few instances where people have been surprised to learn I am able to drive on my own, and I know in the disability world it is no easy feat. But I also know that if I had been unable to drive, I would have found some other way to take on an active role in my world. After all, my life has always been one of adaptation, but it has never been one of defeat.

 

Dating With a Disability

Even though I eventually got lucky with my boyfriend (who I’ve now been with for 3 years), the dating scene was intimidating for me through all of my teen years and throughout college.

I used to consistently doubt that I’d even ever find someone to be with because I thought, “who’s going to love me that way with my physical disability?”But the point I’m trying to make is this: that thought wouldn’t have entered my mind so strongly were it not for societal perceptions of disability. People don’t think about disability and intimacy in the same sentence. That may be harsh, but it’s true. I know this because it’s been my reality.

I remember when I was a teenager and I started liking boys. I went through the typical phases of having crushes, but with an added hiccup. I constantly wondered whether the boys who liked me actually liked me or if they felt sorry for me due to my disability. Most of the guys I ended up liking in those early years were the boys who were consistently nice to me, and because I was so used to being indirectly bullied through school, I gravitated to the boys who treated me with kindness and friendship that felt genuine and real. However, even with those boys, the crush was only one sided, and I was “friend-zoned.” I liked them in the “I want you to be my boyfriend” sense, but they just wanted to be friends, and that was heartbreaking for me at the time. It took me years to realize that those friendships were not only real, they were the kind to stand the test of time and still be strong throughout the seasons of life.

I should also add that up until my junior year of high school, I attended private school, and at my private school, I was the only student with a disability. Being surrounded by friends who had no problem getting boyfriends was consistently frustrating. I watched my friends with their boyfriends, knowing they didn’t have the added challenge of wondering if someone would ever take them on a real date as opposed to a “pity date.”

It wasn’t until I was in college that I started feeling more comfortable with guys. Yes, I still had a lot to work through, but in the weird (and wonderfully hippie) city of Asheville, I had finally found a place where I belonged. Throughout my sophomore and junior years of college, I still had some experiences with guys that weren’t ideal and didn’t last, but I was learning. Once, I started talking to a guy who worked at a nearby bakery. When one of the first texts he sent me was, “Are you even capable of having sex?” I blocked his number and never talked to him again. In another instance, I had a few dates with a guy who was incredibly outdoorsy but also incredibly full of himself. While he was initially respectful of my disability, he later wanted to be intimate before I was ready. When he would not respect my decision to wait until I felt comfortable, his inner jerk surfaced, and he said “But no one’s ever said no to me before.” My response, “Looks like I just did.” I kicked him out of my apartment and my life.

I should note that even these early experiences taught me a lot about dating and relationships, and especially dating with a disability, and they helped prepare me for when I would meet the right guy. My friends and family will tell you that I spent years wanting nothing more than a relationship. I used to get so discouraged when they’d say, “It’ll happen when you least expect it.” Turns out they were right.

Sometimes it blows my mind that the first guy I entered into an actual relationship with ended up being the one that stuck. But in other ways, it made total sense. We met in an unconventional way, but looking back on it now, I know that we would never have crossed paths had we not met in that way. By the time we met in my senior year of college, I knew what I was looking for in a guy: someone who treated me with kindness, had a good sense of humor, and wasn’t at all repelled by the fact that I had a disability. When I first met my now-boyfriend, he was all those things and more, and within a few weeks, we were completely smitten with each other.

However, I was still unsure of a lot. I was unsure whether this was a guy that could see my disability, but also see that it was only a piece of me. I didn’t know whether he would comfortable with the fact that I have certain limitations that are always present. But more than anything, I knew I didn’t want to screw this up. For once, I didn’t want my disability to prevent me from experiencing something I really, truly wanted.

I remember the first time I caught my boyfriend staring at me. We were in the kitchen of my apartment, and I was washing dishes. I glanced over, and he was staring right at me. Confused, I responded with “what?” See, up until this moment, I had been stared at my entire life because of my disability, and I couldn’t even fathom that someone staring at me could be a positive thing. When he responded with, “I’m just looking at you,” I broke down crying. I broke down because I was falling for him, and I broke down because for the first time, I truly felt seen. For once, I wasn’t being stared at because of my differences. And for the first time in my life, a guy wasn’t just seeing my CP, but every single part of me…and it was wonderful and terrifying all at the same time. But it was love. It was our story. And it was only the beginning.

My Simon Mall Experience As Someone With a Disability

About a month ago, my boyfriend and I went to Haywood Mall in Greenville, South Carolina, because it was the closest mall to us with an Apple Store. As someone with a disability, going to the mall is a pretty huge ordeal because it’s difficult for me to walk long distances before I either become too tired or am in so much pain that I can hardly move. Two years ago, I bought a mobility scooter to make things like a trip to the mall way less daunting, and it has seriously made a world of difference in terms of my independence. However, on this particular day, my scooter wasn’t properly charged, thus making it useless for our weekend mall excursion. Therefore, onto the mall we went, knowing that upon arrival we’d need to locate a wheelchair since the particular mall we were going to was the largest mall in the state (of course).

Upon arrival, I pulled up a map of the mall, which explained that the Customer Service desk where the wheelchairs were located could be found inside of Macy’s. So, off we went into Macy’s, but upon finding the customer service desk, we were informed that wheelchairs were no longer located in Macy’s and could now be found outside of Belk’s. With a sigh of frustration, off we went, silently hoping that Belk’s was not on the entire opposite end of the mall. As someone with a physical disability….long distances (especially when walking) are not my friend whatsoever.

With as much stamina as I could muster, we made it to Belk’s (which thankfully was not on the other side of the mall). However, as we surveyed the area, we realized….no wheelchairs here either. What the crap! By this point, my boyfriend was becoming really frustrated, and I wanted to cry. I knew I needed to rest, my back was killing me, and I needed a damn wheelchair. Out of the corner of my eye, I spotted a mall security officer and kindly asked him if he knew where I could find a wheelchair. He then took us to a long, obscure hallway right next to the entrance to Belk’s (which we definitely would not have seen had he not pointed it out). WHY, in public places, is accessibility-related information STILL pushed back into a freaking corner? The fact that we wouldn’t have found this office had the officer not pointed us directly to it proves how far we as a society still need to come in accepting and normalizing disability.

The security officer informed us he wanted to check the management office to see if there were any wheelchairs there. He looked. There weren’t. He radioed some of his other officer buddies to see if they knew where an available wheelchair was. They didn’t. The officer then proceeded to go look for one, informing my boyfriend and I that we could wait in the management office until he returned. We waited 10 minutes…20 minutes…30 minutes…an hour. By this point, I was pissed. I pulled up another mall map and discovered that the Apple Store wasn’t far from us, so we proceeded to walk. Was it an easy walk? No. Was I already in an insane amount of pain? Yes. But honestly, I was tired of waiting to be accommodated.

This experience got me thinking about a few different things:

  1. Why are there not more wheelchairs available in a huge place like a mall? Heck, there are more scooters available at my local Target and Ingles grocery store than at a shopping mall! Where is the logic in that?
  2. Why aren’t wheelchairs simply placed at every mall entrance? I know this could be somewhat frustrating and might mean investing in a pretty huge amount of wheelchairs, but it would be so much easier for customers. I’ve been to malls before that have provided strollers at each entrance and you just put it a quarter for use and get your quarter back when you’re done using it. Why can’t we have the same thing for wheelchairs? If malls are going to be supportive of families with small children, why not extend the same courtesy to individuals with disabilities?

My experience at Haywood Mall reminded me that I live in a world not build with me in mind. Disabled people are a minority, and while the Americans with Disabilities Act of 1990 was a big step in the right direction, there is still so much to be done. While I am used to living in a world that I’ve constantly had to adapt to, it doesn’t mean it is any less frustrating. I’ve had the mindset all my life that if I want to do something, I’m going to figure out a way to do it that works for me, but that doesn’t mean that I’d shy away from receiving a helping hand every so often. The disability community has been knocked down time and time again over the years. It’s time we speak up…for ourselves, for the rights we deserve, and for future generations of the disability community.