The memory of my first concussion is fuzzy, like most of my memories at this point. While the moment itself isn’t something I often think about anymore, the lasting impact it’s had on me as a now-disabled person is something I contend with daily. All that I remember of that day is what happened right before and immediately after the injury, simply because I’ve had to recount it to doctors so many times in my quest for a diagnosis.
I was eleven and in the middle of a heated game of recess soccer, which, on warm days like that one, took place in the parking lot across from my Catholic school. I positioned myself in front of a classmate – he was a linebacker on a local football team, so he was pretty big for an eleven-year-old – and focused my eyes on him. I hoped to swipe the ball from him, but instead of trying to go around me, like I’d assumed he’d would, he kicked it with the tip of his foot. The ball shot up, hitting me directly in the forehead, and I fell back, knocking my head on the rough asphalt that was cracked and worn from the constant flow of cars. I blacked out for a few seconds, but once I came to, I felt fine, so, in true kid fashion, I got back up and kept playing like nothing had happened.
It didn’t occur to me to mention it to anyone, especially because I felt okay in the moment. Obviously, this was a mistake. If I’d known better, if my classmates had known, I’d like to think we would have stopped the game and told an adult. No teachers had seen what had happened, as it was always difficult for them to keep track of so many kids in that huge parking lot, especially with cars blocking their view. Besides, nobody had explained to me that a hit to the head needed to be monitored. Eventually though, I stopped feeling okay and couldn’t ignore the newfound pounding pain in my head. I’d never had headaches before and had no idea what to make of the pain. Even still, it took three days before I actually told my mom about what had happened. My rightfully concerned mother took me to the doctor’s office, where they told me that I had a concussion and advised us on the next steps:
No sports or exercise until symptoms go away.
No screens of any kind until symptoms go away.
No school until symptoms go away.
Get lots of rest.
Avoid light.
Symptoms were supposed to go away within a week or two. Instead, I spent a month in the dark.
Concussions, or mild traumatic brain injuries (mTBI), the “mild” meaning there is no obvious damage on MRI or CT scans, are a relatively common injury. They’re most often associated with professional football players or student athletes, though anyone can get one from a strong enough hit to the head, or even from whiplash. Despite being a well-known injury, most people, doctors included (at least in my experience), aren’t aware that a simple concussion can evolve into post-concussion syndrome. The severity of the initial injury doesn’t play a role in whether someone will develop PCS. In fact, doctors generally aren’t sure what causes it. PCS impacts physical, cognitive, and emotional health; it is characterized by dizziness, balance issues, and headaches, as well as light and noise sensitivity, executive functioning issues, irritability, fatigue, and tinnitus. It’s estimated that about 15%, but likely more, of those who’ve suffered a concussion will develop PCS, and I’m one of them.
Concussions are constantly being researched and reevaluated. Even in just the past ten or so years, the treatment plan for an mTBI has greatly changed. In a study of 1,500 children, doctors found that total rest, with no physical or mental activity, can actually be detrimental to healing. This 2023 study showed that children who returned to school within a few days, with accommodations, and engaged in monitored, light aerobic exercise had better outcomes, “especially for those who initially felt worse.” Maybe if doctors knew this when I suffered my first concussion, I wouldn’t be dealing with these symptoms now, but I’ll never know for sure. It likely didn’t help that, just after school had ended and I had supposedly recovered, a car driving the wrong way struck the car my mother and I were in. Though I wasn’t diagnosed with a concussion after that accident, I can’t help but wonder if I did have one, but it was missed, or if the sudden collision resulted in a permanent resurgence of my symptoms.
Something I’ve come to understand through my own experiences and those shared by the disabled community is that the general public doesn’t seem to realize that disability can come at any point in your life, for any reason. It’s not just reserved for older populations or those born into it, and because of this, nobody prepares you for it. They certainly don’t do so when you’re young. Nobody tells you disability is not a constant. Your symptoms fluctuate. Sometimes they get worse over time, as they have for me. Nobody tells you what it’s like to have to give up the things you love. Maybe that’s a natural part of life, but for a kid, that feels nearly impossible, especially when it’s so sudden. Nobody tells you about the frustration. You’ll feel it towards yourself, at not being able to do what you used to be able to, towards your doctors, for not having options, treatments, or answers, and towards the world around you, a world that no longer serves you well. It isn’t until you become disabled that you realize how inaccessible the world can be.
PCS has taken away or impaired my ability to do many things, as well as my capacity to navigate the world in a typical fashion. For me, giving up sports has been one of the hardest things about this whole experience. Even now, I still miss it. At the time of my first concussion, I played basketball and volleyball, but suddenly, doing so became incredibly difficult. Like a lot of younger siblings, I also wanted to follow in my older brother’s footsteps by running track. I barely lasted one practice.
Exercise, whether it’s doing rigorous sports or just going up the stairs, leaves me dizzy and dazed, my head pulsating with pain. This is likely caused by dysautonomia, which refers to dysregulation of automatic body functions, such as heart rate, blood flow, and breathing. Though that symptom is more often associated with other disorders, a study from 2017 stated that “dysfunction in the autonomic system has been found to be a major factor in the symptomatology” of PCS. This means that, while doing any kind of exercise, it’s probable that my body doesn’t properly adjust itself to the movement, triggering symptoms of disorientation and head pain, among other things.
While I was stubborn at first, unwilling to give up the sports I loved so much, as I neared the end of middle school, I realized I couldn’t continue as if nothing had changed and ultimately made the decision to leave that part of my life behind me. Even though I had stopped playing team sports, I was still required to participate in gym class. Unfortunately, this requirement led to me sustaining another concussion during my sophomore year of high school at the age of 15.
Some days, our gym teacher didn’t have any plans and would let us do whatever we wanted. My second concussion happened on one such day. Our gym was new and sleek, as it had been completely built from the ground up a few years prior to me starting at that school. There were six hoops on the court, two main ones on either side of the court for games and four on the sides, facing inward. As I missed basketball the most, I’d usually spend those days by myself, shooting hoops for as long as I could. It never took long before I would start feeling unwell, but since I was by myself, it meant I could take it slow and stop if I needed to.
On that early January day, I was doing just that, playing basketball on my own. There must have been a few others around doing the same thing, but I remember one group was utilizing the full court. I tried to stay out of their way, but I didn’t succeed in doing so. I heard the basketball hitting the rim behind me, and while I knew that it bounced off, I didn’t think much of it until it hit the back of my head. Though this blow was certainly not as strong as the first, science tells us that, after someone has had a concussion, it takes less force to induce another one. At least I managed to stay upright and conscious that time.
Because I felt okay in the moment, and school was nearly done for the day, I pushed through the remaining few hours before getting picked up. I quickly told my mom what had happened. We headed to the doctors’ office immediately, and I was once again told to stay out of school and do nothing but rest. Even though I was 15 then, and I thought I knew better than to completely brush off such an incident, I acknowledge that I didn’t handle that situation the way I should have. Forcing myself to push through the pain of a fresh injury likely did nothing to help my disability, but it was a tactic I had learned over the years; I had no accommodations and was constantly clashing with my symptoms in an effort to keep up with the world around me. Everyone assumed I was an “average” able-bodied kid, so I was held to the same standards of my peers, and I think I subconsciously held myself to them too. So, because being in pain was nothing new to me, I decided not to ask for help after my second injury. I didn’t think I’d get any “special treatment,” or that I even deserved it.
Once I had finally “recovered” from that second concussion, I was disappointed but not surprised to find that the symptoms lingered, and that they’d gotten worse. I struggled greatly over the following years as I navigated such a huge shift in my physical and cognitive health. I was getting older, but at a time when I was supposed to be learning how to be independent, I had to learn to rely on others instead. Not being able to have the freedom and independence that my peers have continues to frustrate me. As a teen, I craved a sense of autonomy, so I struggled relying on others. I continue to struggle with this as an adult, but I am better at it than I once was. Still, there are major milestones of my teenage years and early adulthood that I feel like I’ve missed out on, and it feels like lacking those experiences will always set me apart from others my age.
In high school, while everyone around me was excitedly getting their permits and first cars, I watched from the sidelines, knowing I wouldn’t be able to. It was exhausting constantly having to explain to classmates, or even their parents, why I wasn’t driving. As a college student, I initially felt embarrassed about not being able to drive, as it often came up in conversation, even if it was just tangentially, like when impromptu plans were being made. That feeling slowly slipped away once I found out I wasn’t the only one that didn’t drive. Still, I am acutely aware of the differences between me and my non-driving peers. For most of them, their financial situation made it difficult or impossible to afford a car and all the other expenses that can come with it. Finances can change though, which may enable them to drive in the future, but my disability won’t go away. I know I’m likely the only one who might never get behind the wheel because it might be too dangerous. Those that have suffered a concussion or developed PCS often struggle with processing information fast enough. I may not be able to react quickly enough to speeding drivers or incoming ambulances or make any of the other sudden decisions required of responsible drivers. Since I can’t drive and didn’t live on my college’s campus, even something as simple as getting to class or work on time or attending an on-campus event would involve a planning session with my mom or brother, or even my friends. While I’m grateful that they’re nearly always willing to pick me up or take me where I need to go, I do wish that I could do these things on my own, or even just decide on a whim to go out and do something on my own.
Similarly, most people I’ve known, both in high school and college, have had jobs. Though I’ve done some freelance work, it isn’t consistent or easy to find, and while I know the typical jobs available to high school and college students are far from ideal, I feel othered because I’ve never had that experience. Those types of jobs require long hours on your feet, something I struggle with, probably because of dysautonomia. Standing for too long causes me to feel lightheaded and even more wobbly than usual. Only as a senior in college was I finally able to find a job suited to my needs: I worked as a writing tutor on campus, which didn’t have any physical expectations, and student-workers were limited to 20 hours a week, so I didn’t have to worry as much about overextending myself as I would have while working an off-campus job. For a long time, not having my own money stripped me of the independence that most people my age had, and though I know my situation wasn’t my fault, I also couldn’t help but feel guilty for the financial strain on my family and my inability to contribute. It was nice to finally be able to earn and save my own money, as well as help my family when I could, and it allowed me to feel more capable and secure, despite the constant presence of my symptoms.
I am faced with the same guilt now, however, as a recent college graduate doing my best to apply to jobs. I feel trapped under the weight of ableist expectations of what success should look like in our capitalist society, expectations some family members are increasingly pushing onto me as a now fully-fledged adult. They don’t see the fear I carry; I don’t know if I will be able to keep up with the demands of a full-time job, and I doubt I’ll be accommodated within the working world, especially as someone who can pass as able-bodied and has no formal diagnosis. I worry that all the hard work I’ve put into my education and writing craft will be for nothing if my symptoms become too difficult to manage in a job setting.
If I’ve learned anything, it’s that consistency isn’t a guarantee when you’re disabled. You quickly come to understand that nothing is linear or simple and that there is always the chance that it can get worse, and for me, it did.
As if 2020 wasn’t bad enough, it was also the year where I started to notice my symptoms suddenly and significantly worsen. It was overwhelming, and I felt like I was losing myself. The headaches became more frequent and more severe; I started having them nearly every day, and sometimes for weeks, even months, on end. The dizziness is a near constant now, and I have moments where I feel completely disoriented and untethered. Along with that, I feel more unstable on my feet than I ever had in the past. My theory is that isolation, plus the lack of physical movement and mental stimulation, greatly contributed to my decline, but I can imagine that the simple act of getting older played a role in this too. Though I’ve mostly gotten used to the changes in my symptoms, I’m still always on edge, waiting for the day when they’ll get worse once more.
Coping with disability and the symptoms that come with it can be incredibly difficult, but not having a diagnosis or the medical support you need certainly complicates things. As a young person, I have faced a lot of barriers in trying to find answers. There aren’t many neurologists for children. Even though I wasn’t quite a child at 15, I wasn’t an adult either. All I could do was wait until I turned 18 to try to get any real help. In the end, the “help” I found was never all that helpful. A study from 2017 notes that “PCS sufferers often feel frustrated and helpless due to the difficulty in diagnosis and the absence of proven treatment,” and this is exactly my experience.
Now, at 23, I’ve seen doctor after doctor, and if I’m honest, they’ve mostly blurred together in my mind. It’s hard to say if that’s because of the repetitiveness of these visits or if it’s just a prime example of my brain’s struggle to hold onto memory the way it used to.
There is, however, one visit that sticks out in my mind. At my last attempt with a neurologist, maybe about two or three years ago, I was initially seen by a medical student. He was soft-spoken and caring – probably the best experience I’ve had with a medical professional since starting this journey – and he conducted the usual tests on me. This primarily includes testing eye movement, hand-eye coordination, and balance.
When he got to the balance test, he explained to me that there are three main systems that control balance: your eyes, the vestibular system in your ears, and the cerebellum in your brain. The test would require me to close my eyes and stand with my arms out, the way a gymnast stands on a balance beam, and to try to walk in a straight line. He said that, by taking my vision out of the equation, the test would show if there was something wrong with the other two components. As I’d had my vestibular system checked in the past and knew it was working as intended, I understood that the test would simply show if my cerebellum was balancing me as it was supposed to. I figured it wasn’t.
He had me start the test, and I got into the position he had demonstrated for me. I nearly fell immediately, but he wanted me to try again. It went about as badly as expected. I remember the concern in his face and him saying, “Well, there’s definitely something wrong.” I was actually relieved to hear that, to hear someone recognize that, no, this isn’t normal.
Unfortunately, this medical student left, and the neurologist that came afterwards wouldn’t listen to my concerns. He said he’d order an MRI, as if to appease me, but I knew that was useless. I’d had many MRIs done by then, and nothing concerning was ever found, which is typical for PCS or any mild concussion; damage from an mTBI doesn’t show up on traditional scans. He insisted that I “just had migraines” and prescribed me something for the pain, but despite how debilitating it could be, I wasn’t there for the pain. I wanted a diagnosis. In a 2017 study of those with PCS, they found that “only 27% … eventually recovered,” assuming they were diagnosed and given treatment at all. However, none of the participants “recovered from PCS lasting 3 years or longer.” It had almost been 10 years by then, and I had come to terms with the unlikelihood of actual recovery or even options to manage my symptoms, but at least a proper diagnosis would not only confirm my suspicions and validate my struggles, but it also would grant me protection in the eyes of the law.
Hearing stories from other disabled people, or even people who had curable, but serious, illnesses, I’ve realized that I’m not the only one that’s experienced this kind of medical gaslighting. My own mother struggled to get diagnosed with endometriosis when she was younger because doctors said her pain was just typical cramps. By the time someone took her seriously, the damage was severe, causing her future pregnancies to become high risk. It’s absurd how doctors, who take an oath to put patients first, so often ignore the lived realities of patients. They act as if they have all the answers or as if they know the experiences of their patients better than they do.
Anytime I’ve brought up the possibility of my concussions being the source of my symptoms, doctors have brushed me off, even though there is so much that is still unknown about the brain. Instead, they’d point to mental illness, without considering that their dismissal of my pain wasn’t doing anything to help my mental state, or they’d say my symptoms stemmed from my weight, without realizing that my exercise intolerance keeps me from losing any of it. To all these doctors, it seemed more likely that I was making it up or being dramatic. I was young, after all. I should be healthy.
Personally, I’ve given up on seeing any more doctors at this point. I know I should keep trying to get a diagnosis – and I still want one – but, after a while, you get so sick of being poked and prodded only to be told you’re making it up. Not to mention I’ve nearly exhausted the list of neurologists available to me, and I don’t have the resources to seek help outside of my state as insurance is unlikely to cover it.
Despite my lack of a diagnosis, I have no problem telling others my symptoms are caused by my concussions resulting in post-concussion syndrome. I know many look down on self-diagnosis, but the reality is more complicated than people assume. For me and many other disabled people, self-diagnosis can be a necessity in the face of an oppressive, uncooperative medical system. My disability doesn’t disappear just because a doctor doesn’t believe there’s anything wrong with me. The fact is that I’ve now gone through over half my life disabled, just without an official piece of paper that agrees with me. Through copious amounts of research and by reflecting on my own lived experience, I’ve come to the conclusion that PCS is the diagnosis that most fits. Maybe it isn’t perfect, but I feel confident enough to use the language I’ve acquired to describe myself and my symptoms. While it gives me no benefits in terms of legal accommodations, it brings me some peace of mind to have a clearer understanding of why I struggle the way I do, and it has helped me come to terms with the permanency of my situation.
In recent years, as I’ve begun owning the disability label, my relationship to my condition, and disability overall, has changed for the better. While it was difficult, and still is sometimes, to claim that identity because of the stigma and ableist ideas that surround it, it’s been an important and central part of my growth as a person and has helped me to coexist with my PCS. Instead of constantly fighting my body and its limits, I’m learning to work alongside it and respect the boundaries it sets. That doesn’t mean I don’t have bad days, but having access to the vibrant disabled community who understands the pain, anger, and frustration that can come from dealing with a struggling body helps me feel less alone. The online disability community brings humor and joy into something that society tells us should be devoid of such things. They empower one another through their advocacy and share tips on accessibility, pain management, and dealing with ableism in the outside world, all things nobody prepares you for.
Without the disabled community, I don’t think I would have decided to start using a cane, or even realized that was an option for me. The knowledge they share is helping me change the way I see mobility aids, something often viewed as only for older people or the “truly disabled,” and usually as something to pity. The reality is that mobility aids aren’t something to feel shameful about or avoid using. They shouldn’t be a last resort and shouldn’t be gatekept from younger people or those with fluctuating needs. They are, simply put, tools that help people manage their symptoms and gain freedom and access to places or experiences they may not have had the opportunity to be a part of otherwise.
This is something that holds true for me; using a cane has made it possible for me to successfully navigate different travel experiences. Over the past few years, my brother and I have become big fans of Halloween Horror Nights at Universal Studios in Orlando, Florida. Attending an event like that requires lots of walking and time on your feet because of the large scale of the theme park, all the lines, and the distance between the various haunted houses and scare zones. Additionally, in the summer of 2023, I had the amazing opportunity to travel to Europe alongside my college’s English department. I was nervous about using my cane because most of my classmates weren’t aware of my disability, and I worried it would negatively impact the way they saw me or treated me. Luckily though, it was generally a positive experience, and my peers did their best to accommodate and help me as needed. It’s hard to do things with one hand when you’re not used to it, so they carried my luggage when I couldn’t and walked beside me when I had to slow down. Because of these trips, I now recognize how vital it is for me to use my cane, regardless of anyone’s opinions. At this point in my life, I honestly don’t think I would truly be able to enjoy, or even experience, such moments without it.
Admittedly, despite knowing how important it can be for me, I don’t use my cane as often as I probably should. Even though I’d like to think I’ve been completely enlightened, I still feel weird about using it. I suppose it’s because using it makes me undeniably, visibly disabled. While that identity is something I own now, the visibility is something that I’m still not used to. I personally don’t feel prepared for the questions or the stares, even now that I’ve used my cane more. However, there are benefits to being visibly disabled; it makes my struggles real to others and allows me to ask for and (usually) receive the accommodations I need, like getting a seat on the Tube while in England. Despite my discomfort, I can’t ignore the fact that, whether I’m traveling or just having a bad day, my cane keeps me safe and steadier when walking long distances or standing on my feet for extended periods of time. My insecurities and internalized ableism are obstacles that I think I simply have to push through and hope that it gets easier over time.
Finding some concrete conclusion to these words feels like an impossible task. I have this annoying desire to wrap it up neatly, to say I have overcome my reality or that I have found peace with my situation, but that isn’t true and only serves to create a happy, comfortable, uplifting story for able-bodied people. The reality is that there is no ending. My emotions are ever-evolving, as is my disability, and for the rest of my life, I have to live with the uncertainty that comes with it. I don’t know if my condition will continue to worsen or if I will ever get a diagnosis. All I know for certain is that I am not alone in my journey with my disability, and with friends, family, and the disability community in my corner, perhaps I can carve out a life for myself that brings me the joy and fulfillment we all seek.
