Since the day I got hurt I’ve lived with a myriad of frustrating symptoms, several of which are outside the realm of typical concussion symptoms. I will describe them below; however, these don't include my symptoms related to the Reflex Sympathetic Dystrophy (RSD) that occurred in January 2015. I'll write about those in a later post!
First are my eyes. My vision is fuzzy now. Not blurry, but fuzzy.
A friend of mine who experienced something similar with her concussion used a good analogy to describe this experience. If you assume that perfect vision is like looking at a High-Definition television screen, then my vision is more like looking at one with regular definition. I can still see okay, but it isn’t nearly as sharp or clear as it once was, and everything always looks as if it’s moving ever so slightly.
I can get along just fine with this except when I look at certain things, particularly things with fine detail or complex patterns. Looking at clothing with thin stripes or tiled bathroom floors, for example, make my vision go into a frenzy. It feels as if my eyes are having a mini-seizure. Reading, what was once a form of escape, has become more challenging than I’d like to admit. The words I try to read generate seismic activity, their letters shaking and moving together, riding the waves of tiny literary earthquakes.
Nowadays I prefer audiobooks.
Quickly diverting my eyes from everyday images has its own set of problems. I’ve come to learn this experience is referred to as after-images, or ghost-images. This is basically when the frame of an image stays in your visual field after you’ve looked away from it or closed your eyes.
Everyone can experience this if you stare at something long enough, especially if it is a screen. For me this happens much more easily, and the images are more pronounced and last longer. If I were to look at someone, especially if it were in a bright room, and then look away, I would see an outline of their frame against the wall often in purple, green or yellow-like hues. Depending on how long I’ve been staring and how bright the room is, the image can last anywhere from seconds to minutes.
It also works with words. I recently hung a painting of the word “HOPE” in capital letters just above my closet door so that it is the first thing I look at when I wake up in the morning. I usually spend a few minutes looking at that word because it has taken on a whole new meaning for me since I got hurt.
When I close my eyes or look away, the words are temporarily etched in my frame of vision, and it is one of the few times I actually don’t mind at all that I experience this ongoing occurrence.
Along with this, I have what is referred to as ‘floaters’. When I look up into the sky I see black and white specs moving sporadically about. It’s as if there are thousands of little nats flying around in the sky. Floaters aren’t dangerous and they usually come about when a gel-like substance behind your eye, called the vitreous humor, begins to shrink. This usually happens as you age, but I imagine happened to me because the force of the hit must have loosened the collagen fibers behind my eyes.
The last visual discrepancy I have is a blind spot in my left eye. I notice it occasionally when both of my eyes are open, but usually it is most prominent when I close my right eye, so it isn’t really a big deal. It is exactly what it sounds like – a small spot of blackness in my frame of vision, slightly to the left of whatever it is I’m looking at.
If I were to read the sentence, “My dog, Wilson, is crazy”, which is true, the blind spot would follow along one word behind the word I am reading. If I read the word ‘Wilson’, the words ‘dog’ and most of ‘my’ are completely covered by the blind spot.
I’ve had my vision checked several times, and everything always comes up normal – 20/25 vision in my left eye and 20/20 vision in my right. This is because there isn’t any damage to my actual eye – the symptoms are all coming from my brain and/or central nervous system.
Next are my ears. Every time I swallow now both of my ears produce a loud popping noise. It’s the kind of noise you might hear when you pop the bubble-wrap used to secure fragile packages; it’s as if a bundle of pent up pressure is being released out of your ears each time you gulp. I read somewhere that the average adult swallows about 600 times a day. So that’s a lot of popping.
I also experience tinnitus, more commonly understood as incessant ringing in the ears. The ringing has become my new companion, the type you might experience after a loud music festival, only it doesn't goes away with the buzz of the alarm clock the next morning.
Blaring is really a more fitting word; ringing has an air of lightness to it, but really it feels anything but light. Silence is now displaced by a cacophonous symphony, my eardrums pounding and vibrating in a rhythm out of pace with the blood heavily flowing through my veins.
I also experience recurrent chills all over my body. When I first got hurt, it started with what felt like lighting strikes running down my spine. At first they were isolated on just my back and it only bothered me at night as I lay in bed trying to sleep, but over time it has started to spread and become more frequent. It isn’t painful at all, but it is extremely uncomfortable.
They usually start at my neck’s hairline, generate a bit of buzz in my shoulders before causing domino-effecting shivers all along the vertebrates of my spine. It is kind of like the goosebumps you experience when it is cold, except for me it happens all the time and all over my body, as if fireworks are sporadically and unpredictably going off in the form of chills.
Along with this, my head constantly pulsates. By that I mean it feels like it has its very own incessant heartbeat; it is as if the blood circulating around my brain is struggling to pulse through because something is obstructing it somewhere along the line.
It is most noticeable when I am laying down with my head against a pillow, and is more intense depending on how active I’ve been during the day. So if I’ve had a busy day or if I’ve tried to exercise (by exercise I mean a slow paced walk, or if I’m really extra risky maybe five or ten minutes on the stationary bike, heart rate below 120 beats per minute), the pulsating sensation will be much more pronounced, which can often make it difficult to sleep.
For me, these physical symptoms are very minor compared to the mother ship of all symptoms I live with – my headaches. I’ve said this many times when trying to articulate the sensations I experience surrounding the confines of my brain, but the truth is calling it a headache doesn’t really do it justice.
And because of that, I’m going to devote a few posts about my headaches, what I finally discovered was generating them and why it is a bit different from a “typical” concussion.
The myriad of symptoms I’ve just described used to leave me in an overwhelmed panic and anxiety; constant, incessant reminders of how much has changed since that day on the ice.
I’ve grown used to them over time.
However, I'm fortunate I haven't suffered much cognitively, especially when compared to the cognitive issues people with Traumatic Brain Injuries and longer-term concussions have to deal with on a daily basis.
I remember feeling foggy and out of it for the first few weeks of my concussion, but beyond that I’ve felt pretty sharp. I could have passed the Concussion baseline test, a test to determine the “severity” of a concussion, within a couple weeks of my injury. The same can't be said for many TBI and concussion sufferers.
I hope that some of the stories shared from guest bloggers will shed light on just how difficult things can be while living with such an invisible yet incomprehensively powerful injury.