I am here to bring you a powerful message: a message of healing, a message of life. Right now you may feel overwhelmed by the challenges facing you. Fears get magnified, priorities get revaluated. Many of us are confronted for the very first time with our own mortality. Healing becomes the magic word. Where do we go from here?
There is a place within you that disease cannot touch, a place where you are whole and radiant with health. This is the sacred place within you where the power of Spirit, the Divine, resides. This power within can transform your life. Attune yourself to it by quieting your mind. Become receptive to its guidance by letting it speak through your intuition.
As you connect with this power you will come to understand that your physical self undergoing a disease experience is only one side of you. Your spirit, the very essence of your being, is whole; healthy, intact.
It is this power in you that will give you strength to overcome your difficulties one step at a time, to let go of preconceived ideas about your health. It will give you the courage to look at your life, heal the wounds of your past, forgive yourself and others, and let go of the anger, resentments and regrets.
It is this power in you that will help you accept yourself totally as you are: your wonderful, creative self, expressed through the gifts you bring to the world, and the limitations of your humanness.
When doubts and worries overwhelm you and trouble your heart, that power within will comfort you, giving you the ability to let go and be free in the moment.
Your focus will shift to the fullness of life; you may rediscover joys lost in the hectic process of everyday living and become grateful for all you have taken for granted.
All it requires are the two most powerful tools in the universe…willingness and belief:
Willingness and belief.
Tullia Forlani Kidde
I heard this one day last year and it resonated with me to my core. I felt it so deeply, like it was speaking directly to me. I was left in tears. I printed it and taped it to my bathroom mirror so I see it every day. “There is a place within you that disease cannot touch,” has become a mantra for me.
There are so many variables that construct our identities. After so much loss during this recovery, I have struggled with my identity and oftentimes feel consumed by my injury. I haven’t felt like myself for 28 months now and feel very lost at times. It has been so long that I don’t even know what “normal” feels like anymore.
I have been told to accept that this is my new normal and that I may not get much better than this. I have also been told that there is hope of more improvement. There are so many unknowns. My faith has been tested. There are no guarantees and letting go of the process and preconceived ideas about my recovery is something that I still struggle with.
While my spirit feels broken at times, I hold on to the hope that deep within me somewhere I am radiant with health. Having this as a reminder is something I deeply hold onto.
It’s about one month post-concussion. I had recently attempted to go back to work despite my physician saying he did not think I would be able to tolerate it and would not be successful. I desperately wanted to prove him wrong and also desperately wanted some semblance of my abnormally normal life before the injury.
Who was I kidding? After just 15 minutes of being there, my eyes felt seared by the fluorescent lights. Everything on the computer screen was blurry. The ringing in my ears intensified and I began to feel like I was going to pass out. This seems to be the norm in environments with a lot of stimulation, so the emergency department environment was way over the top.
The concussion specialist decided that I should start a round of steroids to help with inflammation of the nerves of the brain. This was supposed to help with pain but also the ringing in my ears. It didn’t help with the pain nor the ringing but it did provide worsened insomnia, a common side effect of steroids. Just what I needed, less sleep than the broken three hours I am getting.
My hockey team has a tournament this weekend. I am having a hard time deciding if I will be able to tolerate watching the games – physically and emotionally. This would be the first dose of hockey since the concussion. The games are at the same rink where I sustained my injury. Just thinking about it makes my heart flutter and I feel nauseated and develop a knot in my stomach.
At this point, it’s still new – the feeling of not really being a part of the team. This injury feels different than any I have experienced in my whole career of playing which makes me wonder if subconsciously I know this is it for me. If I start to feel down about it, I hold on to the glimmer of hope that I will be out there with them again in the near future. We are supposed to travel to California for the National Tournament this season – something I’ve been ecstatic about.
I took the reins of the pre-game locker room music. It’s something I have been in charge of on many of the hockey teams I’ve played on. There’s nothing like 10-year-old me getting pumped to “Who Let The Dogs Out.” I made sure that every time I scored a goal in college, “You Make My Dreams (Come True),” by Hall and Oates would start blasting in the rink. My friends know this about me – I am constantly making new music playlists. Naturally, I’ve been so looking forward to making a playlist for the National tournament. Well, and eating…I could not wait to compile a list of all the restaurants we would eat at on the trip.
I decide to go watch a game at my team’s tournament. I give myself just enough time to make it for the puck drop – I don’t have it in me to enter the locker room. I take some big breaths and give myself a little pep talk before going inside. I enter the arena and walk in to the rink. As I walk by the boards where my injury occurred, it comes flashing back – the stick to my chest, the sound of my head slamming the ice, the darkness, the ringing. I keep moving as fast as I can. I pass by my team’s bench and my teammates wave and smile and seem happy to see me. It’s a nice welcome but I feel strange.
I stand in the corner to watch the game alone. I’m watching for about three minutes and already feel dizzy. I suddenly can’t track the puck. “What is happening to me?” I wipe my eyes in some desperate attempt that it’ll allow me to see better. This is the first time I am truly realizing the inability of my eyes to track moving objects. I feel sick to my stomach and it feels like I’m being stabbed in the eyes. It’s better If I just close my eyes.
I close my eyes and listen to the skates cutting into the ice, the sound of the puck against the sticks. I take a big breath and the cold air of the rink fills my lungs. It’s a feeling of home, a feeling of comfort. The feeling is short-lived and is replaced with one of despair and heartache.
Something about being there pushes me further into this deep feeling of isolation, aloneness. Even though my teammates were welcoming and seemed happy to see me, I was left feeling this way. And it was also hard because I don’t look injured so it was invalidating as to why I wasn’t out on the ice with them. It’s a strange feeling that I somehow feel like a failure even though I didn’t choose this for myself. There’s even a sense of embarrassment.
I’m still in denial at this point that this will last much longer. So, I missed one tournament; I’ll play in the next one and those following. Soon enough it will be time to travel to California for Nationals and everything will be back to normal. I talk to some teammates after the game and I downplay my injury because again I feel shame and I’m not willing to accept the seriousness of it yet.
Admitting to the injury feels like admitting defeat and I’m just not sure I’m ready for that.
It’s almost a month post-concussion. I haven’t been willing to acknowledge the memory issues I am struggling with. I make post-it notes for myself – to remember my laundry, take my pills, turn off the stove. My mom has noticed but I try to avoid it and not talk about it. It just adds to my long list of symptoms. I find I am still in denial about a lot of things.
I find myself going downstairs, standing in various rooms of the house and forgetting why I went there. My Mom tells me I keep asking the same thing I had just asked her about five minutes prior. I have no recollection and I am starting to feel annoying. My sister jokes that I’m Ten Second Tom from the movie 50 First Dates, who forgets everything ten seconds later. I try to joke and laugh about it to cope but really, I am feeling a little scared.
I voted or attempted to vote today. I really didn’t feel well enough to but went anyway. The ballot was blurry and it was exceedingly difficult to track lines and fill in bubbles. It was almost as if the bubbles were moving. Standing in the little cubicle, I started to panic. Squeezing my forehead to provide some relief of the pressure in my head, I tried to rush through it to make it more bearable. I couldn’t even remember who I voted for. After, I felt defeated, shameful. I was left with a pounding headache, nausea and double vision. How could something so simple be so difficult for me?
I try to stay “active” in some form by going on daily walks. It doesn’t compare to my activity level before the injury but at least it’s something and I do enjoy being in nature. I attempt to entertain myself on the walks by listening to podcasts about murder mysteries but also podcasts on traumatic brain injury because maybe I will hear something helpful to my recovery. I also want to attempt to keep my brain sharp but I guess it’s not so sharp if I’m having memory issues.
I went on a walk in my neighborhood yesterday – a walk I have been on many times but decided to take a different route home. I ended up on a trail in the woods that I thought would meet back up with the main street although it never did. The path split into three other directions and I had no idea where I was or where to go. I started to panic a little.
I thought maybe I could just turn back but I had forgotten where I came from. I slowly started turning in a circle to observe my surroundings and different outlets and the panic kept heightening. Suddenly, it felt like everything was spinning around me. I felt like a speckle in the middle of giant trees that had blurred together into one. It felt like I was walled in. I think maybe I was panicking more so at the fact that I should’ve known where I was but didn’t.
I became hot and sweaty, the ringing in my ears intensified, my head and heart were pounding. I stopped the podcast and crouched down on the ground and focused on my breathing in an attempt to calm myself. I became scared being there alone and lost. I picked a trail and started running as fast as I could. Everything was blurry, my head pulsating and my surroundings were spinning but I wanted to get out of there as fast as possible. Relieved, I made it to a street I recognized. Eventually, I made it home. In retrospect I don’t even know why I was panicking so much because I was in my neighborhood and close to home.
It was so irrational. Maybe I should really start acknowledging the memory issues but something is stopping me.
It is three weeks post-concussion. At this point I am miserable and just want to feel normal again. I’ve been waking up with pounding headaches that last all day. My neck is so stiff it’s almost like it has a death grip around my head. If there is ever a point in the day where the pain improves a little, it’s always in the background, lingering. Something small triggers it to come back full blast – I move my head too quickly, I see the glare of the sun, I focus on reading something for a minute too long. I’m starting to feel crazy because of the ringing in my ears.
Despite the symptoms, I try to push through the best I can and still attempt to carry out some of the normal things I did before. It’s my best friend’s birthday and I am supposed to go out to dinner with a whole bunch of people to celebrate. Despite the fact that my friend would understand if I decide I can’t tolerate it, I feel like I need to no matter how I’m feeling. My guilt starts to kick in even thinking about bailing.
I made it to dinner. It is such a busy environment. There are bright lights, TVs lining the walls every few feet, loud music blasting among the muffled crowd noise from a hundred different conversations occurring in the space. It’s not long before I feel myself breaking. It’s like my brain is a computer trying to re-boot itself but is frozen on the re-boot screen in the process. I want to be able to tolerate this so badly. I tell myself I can push through.
I can feel my eyes giving up. I feel disconnected. I can’t focus and I can feel them jumping back and forth like little earthquakes. The glare of the TVs, people moving, all the sounds and noises – it’s sensory overload. I feel very hot and start profusely sweating.
I am trying to maintain conversations with various people at the table but suddenly it’s hard to make out their faces and I begin to see double. I start freaking out internally because I am having a hard time even making out what they are saying. Their lips are moving and all I can hear is the ringing in my ears mixed with the music and muffled crowd noise. I can feel my heartbeat pulsating through my eyes and head.
My ears are now ringing full blast. Please make it stop. I feel like I’m fighting my body because it wants to turn off and pass out. I go to the bathroom where I sit in a stall for a few minutes and just hold my hands over my ears and start crying.
I need to pull myself together. I don’t want to bring attention to myself or ruin anyone’s night, certainly not my friend who we are celebrating. I’ve made it this far; I can do this. I wipe the tears from my eyes, put a smile on my face and go back out to face the storm of the restaurant.
I look out at everyone talking, laughing and having a good time and I feel isolated. In an environment of 200 plus people, I feel alone.
I manage to make it through the rest of the dinner. I think I did a pretty good job of playing along and don’t think anyone could really tell what I was experiencing. I make it home and find myself sitting on my bathroom floor, squeezing my head with my hands as the tears pour. I scream in desperation, “Why is this happening?”
It’s two weeks post-concussion and I am already feeling lost and impatient. The loss of routine with work, exercise and other seemingly little things like just being able to effortlessly get into the car and go for a drive is starting to get to me.
Growing up, I was taught that you have to work hard for everything in life. This flowed into my competitive nature and spirit in sports. The mentality that if you work harder, you will be at the top of your game and be successful. My Dad would always say and still says, “Give 110%.” During this recovery, I keep getting down on myself because I’m not progressing. I work harder, push myself harder, but my symptoms just keep getting worse and worse.
My busy, active, purposeful routine vanished and was replaced with hours of lying in the dark and no routine at all. Every hour of every day I am riddled with pain and fatigue among many other symptoms but in an attempt to maintain some sort of normalcy, I start going to the gym.
I attempt to incorporate some light cardio exercise at the gym. The doctor gave me the green light to do this. Busy environments are very triggering for me with all of the sounds, lights and movement. It seems like this issue is actually becoming worse, not better. I thought with more exposure, it would become easier but it has really been the opposite.
I just want to be active and really I am hoping this will allow me to recover fully and get back to work and on the ice soon. I am trying hard to hold on to the thought that this is only a small bump in the road and I’ll be back to my normal again very soon.
The gym environment is not very welcoming to my symptoms. My orange lensed glasses only help so much. The lights, TVs, music and people moving about cause my heart to pound, tinnitus to become louder and to feel a general sense of panic. This is new – anxiety. I’ve never dealt with this extent of anxiety in my life.
I hop on the elliptical but just the little up and down movement of the strides causes me so much dizziness and nausea that I have to stop immediately and close my eyes. It feels like I am out on rough waters again, the same way I felt just after the concussion. “This is pathetic,” I thought. I went from being able to skate, run, and work out to this.
Maybe the stationary bike will be more tolerable. I start pedaling at the lowest level possible at a very slow pace. I close my eyes so I don’t have the visual input of the space around me coming in. I am trying to get my heart rate up but if I get it up to 115 beats per minute, my head starts to pound and I can hear loud whooshing into my right ear in addition to the ringing. It is as if my head is about to pop.
The stationary bike becomes very monotonous – riding so slow and at such a low intensity with my eyes closed. I ride for twenty minutes which feels like an hour. I’m starting to wonder if I am already severely deconditioned. How could that happen within two weeks?
I want so badly for my balance to be better so I can show them on the next concussion assessment that I can do it. I go into an area of the gym with a handrail against a blank wall. I attempt to balance on one foot which I can do while holding the rail. I slowly release my hands to balance without holding on.
As soon as I release my hands, I get the feeling like I am unsteady and about to fall over. I grab ahold of the handrail on the wall and squeeze it tight in fury. I become so irritated with myself. I think, “I can do this, I just need to try again and try harder; this is mind over matter.” I try over and over and harder and harder with each leg and I am unable to do so without falling over.
I feel like I’m giving 150%. I am trying harder than I ever have in my life and somehow, I am still getting worse. I am becoming more frustrated and more impatient with myself.
I soon become enraged. What can I control anymore? How will I be able to go back to work or skate again when I can’t complete such simple tasks? I clench my fists and nearly punch the wall. This just isn’t me. I start crying in the middle of the gym.
I describe my experience to one of my best friends who has been very understanding and validating. She offers to start coming to the gym to ride the stationary bike with me. I cannot express how much this means to me; it brings me to tears. This simple act of kindness allows me to feel supported and a little less alone, which means everything.
We continue to meet at the gym, do our stationary biking, lie on the mats in the ab room mostly pretending to do some core exercises and laugh. And just for a brief moment, it was a temporary escape from the reality of my situation.
You know that feeling after an all-nighter or just a night you stayed up way too late? Or the feeling of a hangover (for those of age reading this)? You feel groggy, nauseous, irritable, like you can’t think straight, just not yourself. But you know you could nap that day or get a good night’s sleep the next night and wake up and feel okay again. The good part is you know that feeling is temporary and it will come to an end. Well, imagine that’s how you feel every single morning when you wake up. It never fades. That’s what this recovery is like. It’s like you are running on empty and on reserves that are almost completely depleted.
In the week that followed the concussion, more symptoms kept emerging until suddenly I was buried in symptoms. I was getting worse and not better. Layer after layer, I was inundated. Somehow, I was still in denial about this injury. I kept thinking, “Okay, just another week and I will be fine.”
I could feel everything I was in control of slowly slipping away out of my grasp. Within just a couple days, I could not tolerate driving. It was the worst driving down streets lined with anything – trees, cones in a construction area, houses. Or a sunny day when the light from the sun causes the effect of a strobe light as it shines through the trees. This would cause so much dizziness and I could feel my eyes jumping back and forth, unable to focus. It was like everything was closing in on me. If it rained, the windshield wipers swiping back and forth made me so dizzy to the point I would almost throw up.
I was suddenly unable to look at my phone without my eyes hurting or feeling cross-eyed. Scrolling on my phone caused me so much dizziness and nausea. The light sensitivity became so bad that it was like the sun was able to penetrate directly through my skull and into the nerves of my brain. I could not bear to have my eyes open without sunglasses or tinted glasses. I started wearing glasses with a yellow/orange tint. To me it was highly embarrassing but I can’t tell you how many comments I received on how “fashionable” they were (and are).
The second night after the injury I started waking up at 0300 AM and could not fall back asleep. Sleep just wasn’t happening. My neck felt so stiff like it was a cement block. The ringing in my ears became so loud, 24/7. Sometimes I would think there was an alarm going off. I’d search for it to realize it was my tinnitus, and then I’d feel crazy.
Nine days post-concussion, frustration started to settle in. From my journal:
“I thought I’d be better by now but I feel like things are actually worsening every day. I am becoming frustrated with my body. Something isn’t right. I do not feel like myself. I can’t focus and everything is blurry. Waking up with a headache and neck pain every day.”
My first appointment with the concussion specialist wasn’t until 12 days post-concussion. It was the soonest I could get in. I thought “Okay, the Cleveland Clinic Concussion Center can get me better.” The appointment was a blur.
At each appointment at the concussion center, each patient is tested with the C3 Logix application on an iPad which tests balance, reaction time, memory and vision. Balance is tested using the BESS (Balance Error Scoring System) which tests balance in a range of foot positions on a foam and hard surface.
My eyes were too sensitive to movement and light to do any of the testing on the iPad. My balance testing had so many errors that I was embarrassed. My reaction time was so poor that I didn’t fall into the ranges for an athlete. I couldn’t stand on one foot without having to reach out to hold on to something in order not to fall. How did I go from being a competitive athlete to this?
There is a concussion symptom severity score taken at each appointment. It includes a total of 27 symptoms and each symptom you are experiencing is ranked from a severity score of 0 (not experiencing) to 6 (severely experiencing). I was experiencing 22 of the 27 symptoms, most ranked 5 or 6. To this day, I still experience 22 of the 27 symptoms.
The physician was concerned that 12 days post-concussion, my eyes were completely glazed over and my symptom severity score and physical exam were that of a patient who had just immediately sustained a concussion.
The physician ordered an MRI of my brain, referred me to an optometrist who I would see the next day and vestibular rehabilitation.
The loud thumping of the MRI machine was nearly unbearable. It was like a hammer directly striking my skull over and over again. I left the machine with a pounding headache and nausea. I felt so lightheaded and hot like I was going to pass out. Completely drained, I laid in bed the rest of the day.
The next day I was evaluated by the optometrist who diagnosed me with convergence insufficiency and accommodative insufficiency. In short, these diagnoses mean the eyes have an inability to sustain focus on a near target and one was caused to turn out instead of in with the other eye leading to double or blurry vision. I was prescribed reading glasses to aid in focusing. The glasses had a tint to them to block blue light and help with light sensitivity.
I was advised to follow up again in one month to determine if I required vision therapy. This didn’t feel right to me and I felt like my condition was being minimized but I listened and went on my way. To this day, I wonder if I had been rehabbing my vision for that month my eyes would be in better shape today. I did start vision therapy with this optometrist after my follow up one month later and went every two weeks. This lasted several months with no notable progress at all. Later, I will discuss my strong opinion on finding an eye doctor who specializes in neuro-optometric rehab rather than vision therapy and the importance of seeking such treatment immediately after the injury.
I then followed up with a therapist in vestibular rehabilitation. The vestibular system is a sensory system that is part of the inner ear and sends the brain information about spatial orientation, motion, head position and balance. I was referred here because of the balance issues and dizziness I was experiencing. We focused mainly on head and eye movements which were causing me great dizziness. I didn’t feel like all of my concerns were being fully addressed and noted no progress whatsoever with the recommended plan but went along with all of the recommendations because that’s what I was told to do. I continued this for months with no improvement at all.
The quick referrals to these specialists are something that I appreciate, however, I do believe it should have been recognized at those referrals that my case was too complicated and needed more complex care. At the very least, I felt like my concussion was downplayed by these providers. I felt like I had to take what the medical model was throwing at me when really that time I was feeling like it wasn’t right or wasn’t adequate, I should have been my own advocate and found more options.
If you are suffering from a brain injury and have a feeling like the care you are receiving is not right or your concerns are being minimized, my best advice to you is to be your own advocate. If you are the loved one of someone suffering from this type of injury and are seeing no notable improvements, you should be their advocate.
Our bodies have a remarkable ability to adapt and so bad behaviors can be learned quickly. During that time period, my brain became accustomed to the dysfunction of my eyes and vestibular system. It is harder for the brain to unlearn a behavior rather than learn a behavior. If I had received the proper treatment early on, maybe I would not have carried these dysfunctions with me to this day. I didn’t know any better because these were the providers I was told to see and so continued even though my gut was telling me it was not right.
I feel like the medical system failed me. I don’t say this lightly because I am a healthcare provider and was part of the medical system. As I have stated before, I was once a part of the problem in the way I brushed off concussions and I may have even been the first provider to have failed a patient experiencing something similar.
This needs to change.
Every treatment modality that has provided some sort of progress for me over the past 27 months has been something I had to research and find on my own.
It is a hard truth that we don’t truly realize how good we had it or just how grateful we are for certain things or moments in our lives until something tragic happens. I would like to think that I am a self-aware person and notice and am grateful for the little things in life. Even though I feel like I appreciate these moments in my life, I didn’t fully understand how important they were to me until a tragic event happened and changed everything.
The start of the hockey season was like the feeling of Christmas morning. There was so much excitement and anticipatory jitters. I never thought that something that shaped me into who I am could also tear me apart.
October 13, 2018. There was a lot of excitement leading up to this day. These would be some of the first scrimmages of the season. It was hard for me to even be able to play this day. I had to make three different shift trades at work to get this day off. Once I finally made all the changes and discovered I could make the games this day, I was elated. It was the best feeling ever. This meant I had to miss our annual hockey fundraiser the night before because I had to work a shift, but it was worth missing that to play with my teammates this Saturday.
It didn’t cross my mind that this game would result in a life-changing event.
The chill, the smell of the arena, that initial sound of your skate crunching into the ice after the ice cut. That accompanied by the best teammates, some whom would retire after this season and so I knew I had to really hold on to these moments with them. I thought I would have another game with my team though.
Unfortunately, this was my last game of ice hockey. I would have tried to ingrain all of those sights, scents, and feelings into my memory and nerves a bit harder if I had known.
The injury did not occur until the third period, with only about three minutes left. The details were made clearer to me after watching the video footage of it. The video makes me feel sick. I am suddenly flooded with emotions and my heart starts to pound. The sound of my head slamming the ice is a gut punch.
It was a typical play; a defenseman dumped the puck in the zone. The puck was in the corner, nowhere near me. I turned and all of a sudden there was a stick to my chest and I jolted straight back. Suddenly the back of my head smacked the ice. The player received a two-minute minor penalty.
I heard a crack and then ringing. Everything was black. Everything was ringing. It was like the aftermath of a bomb in a movie – fog and ringing. Uncontrollable tears dripping down the sides of my face onto the ice. While lying on the ice, my eyes were open but all I could see was black. I thought if I closed them and squeezed them tight enough that my vision would come back. I did this several times and it was still black.
Suddenly there were blurry faces hovering over me – their mouths were moving but I couldn’t hear anything except for the ringing in my ears. I kept desperately squeezing my eyes closed to open them up again and see clearly. It never became clear. Tears continued to pour.
I couldn’t open my mouth to form words. I cannot remember anything else after other than stumbling to the locker room, being unable to see much. I felt like I was out on a boat on very rough waters reaching out to hold on to anything to keep me up. The walls seemed to be moving and my vision kept tunneling.
I made it to the locker room and removed my equipment with assistance. My Dad drove me home but kept insisting on going to the emergency department. I declined an ED visit. We made it home and I put ice on my neck, took some Tylenol and thought I could just “sleep it off.” I refrained from taking any type of blood thinner in the event I did sustain a brain bleed.
In typical fashion I tried to minimize and “play through my injury,” in the form of working. I attempted to work a shift in the ED the next morning at 0600 am. It was a huge blur. I remember having to run to the staff bathroom to vomit and dry heave over the toilet. Everything was spinning and the words seemed to be moving on the computer screen. The lights were blinding. The beeps of the monitors sounded like tornado sirens.
I thought I’d be viewed as weak if taking time off for the injury. Returning to work and pushing through the injury was not smart. I wonder if I had just rested those first crucial 48 hours after the injury if that would have made a difference today. Thankfully, I was sent home from work about half way through the shift.
My first thought the day after the concussion was to research the best helmet on the market for concussion prevention (even though no helmet can truly prevent a concussion). I had my mind set on playing again. This would just go away. I found myself in denial regarding this head injury, a similar melody that occurred back in college. Was this bargaining? Was I just postponing the inevitable sadness and confusion?
It wasn’t until a couple days later that I started panicking. I took my dog (Walley) out for a walk and could not read the street signs because they were so blurry. I started seeing double. Again, I would squeeze my eyes tight just to open them again and see clearly but it didn’t work. Cars would drive by and I would be completely startled and feel like I was going to pass out.
Still, I thought I would just need mental rest for a week or two and I’d be back on the ice and back at work. After all, that’s what you are supposed to do for a concussion, right?
My initial symptoms following the injury were dizziness, headache, neck pain, tinnitus (ringing in the ears), blurry and double vision. As days passed more symptoms emerged. It seemed like layer after layer was building and I could do nothing to stop it.
As I was trying to push through it as much as I could there was so much going on underneath the surface that I didn’t realize – a cascade of events that would catch up to me. And they did. It was like a little, isolated fire in my brain and body that quickly erupted into a forest fire. I didn’t realize it but I was slowly falling apart and this would continue for over two years to this day.
I didn’t realize that the darkest days of my life were brewing.
All of my concussions were sustained during ice hockey. My first concussion occurred in an ice hockey game in high school in 2007. At the time, I was told to just lie in a dark room and rest for a week which I did. I didn’t seem to have any residual or lingering symptoms and carried on like normal one week later. The next concussion occurred later that season. This was also in a game and I lost consciousness for a little over twenty minutes. I was hospitalized and observed after imaging. The doctors said I had “multiple areas of bruising on my brain” that was monitored with more imaging. After about two weeks, I carried on like usual. I didn’t notice any residual symptoms after that.
Freshman year of college I sustained at least two documented concussions, among many other subconcussive head impacts. They seemed like pretty bad hits at the time – my head pinned between a player’s body and the boards. It was just accepted to play down the injury and minimize the symptoms if you had any so you could keep playing. This was pretty much the culture. Maybe it was just competitive hockey player pride – I did it and many of my teammates did it. At the end of the day, you didn’t want to let your teammates down even though you were sacrificing your own health.
I remember being so dazed and dizzy after a hit. The athletic trainer came over to the bench to evaluate me and I somehow pretended that I was completely fine. I was cleared to go back out like nothing ever happened. I can’t even tell you how many times this happened.
The next weekend we had an away game. The opponent’s athletic trainer was helping me before the game and during the conversation I would try to respond but could not express the words I wanted to say. I knew what I wanted to say but I opened my mouth and I could not express the words. I started panicking. What is happening? I brushed it off and got ready and played in the game. I did not tell anyone.
The summer after freshman year I started experiencing a multitude of issues – lack of focus, memory loss, headaches, struggling to find words. I saw several specialists who did a lot of testing and determined I should take the next year off of school and hockey to allow my brain to heal. I considered it…lightly. I couldn’t be away from my friends and from hockey. I started a few different medications to help with the symptoms and headaches. I went back to school and continued ice hockey.
I wish I had never done that – taken the head hits so lightly. Don’t do what I did.
Sophomore year was going great in terms of not sustaining any concussions until one game I took a cheap shot. I was completely wrecked. My head slammed the boards. Black out, dizzy, ringing. I got up in an attempt to skate to our bench but every time I made it to my feet I would black out and fall back down. I knew this was bad. At least I acknowledged that. I made it to the bench and left the game where the trainer evaluated me.
Before the sophomore hockey season we took the ImPACT test to have a baseline of cognitive function if we were to sustain a concussion. ImPACT stands for immediate post-concussion assessment and cognitive testing. This is a computerized test that is used to determine when you can return to play based on comparison to your baseline scores prior to the concussion.
After this concussion, I could not be cleared to return to play until I scored better or the same as my baseline testing. I took the test three times and failed. I really struggled with matching and identifying the shapes that flashed on the screen and disappeared.
I was becoming exceedingly frustrated and just wanted to play. It was embarrassing that I couldn’t pass. During my fourth attempt at the test, the athletic trainer left the room and I was alone. I felt like I lucked out. I saw a dry erase marker nearby and thought, “this is how I will pass this test.” I used the dry erase marker to make little notes, dots and write out letters on the computer screen to show me where the disappearing shapes and letters were because otherwise I would never pass – I couldn’t remember anything. I passed using the marker and was cleared to return to play.
This was my last documented concussion from college and if I did experience any residual effects, I just pushed through it. I didn’t start to develop chronic daily headaches until about a year to a year and a half later. I was shocked when I saw a neurologist who diagnosed me with post concussion syndrome. I asked, “how could this be when my last concussion was over a year ago?” That’s when I first learned the symptoms can be delayed by months to years even.
At that point I tried so many different medications and really suffered for years. I saw an integrative medicine doctor who discussed the guts involvement after brain injury. More on this later. I changed my diet and the headaches vanished. I was feeling a lot better and felt pretty much back to normal.
Everything was good until the most recent concussion. You think I would have learned from these previous mistakes, but I didn’t. I again tried to push through it and minimize it the best I could. Something I regret to this day.
I often ask myself if I had done things differently then, would I be in the position I am in now? Is my current recovery a cumulative effect of all of these hits and the last one was the final straw? I wish I had done things differently.
Don’t do what I did – don’t play through an injury, don’t minimize it, be honest because otherwise the protocols that are in place are useless.
Being a hero doesn’t mean pushing through an injury. Being a hero means being strong enough to be honest and take the injury seriously.
This journey through my recovery has been painful, draining and heartbreaking to say the least. With progress always comes a setback or a few and it is deeply disheartening. Even with such incredible support I have received from friends and family, it is still so easy to feel alone. This comes back to this injury being essentially unseen to the eye which leads to so much misunderstanding and unfortunately, judgment.
Brain injury has been referred to as the silent epidemic. This is due to lack of public recognition of the complexity despite a staggering 5.3 million Americans alone living with disabilities secondary to brain injury. The effects are often downplayed or even unrecognized and untreated in a lot of cases, so the actual number is likely much greater than that.
I had experienced this stigma and downplaying of concussions personally in the medical field. I realize now that I was part of the problem. In clinicals I would see a patient who sustained a concussion with my attending and the patient was told to just rest for a week and refrain from use of electronics and send them on their way. Essentially, they were told to sleep it off. I would see a patient in the emergency department with a concussion and advise them to follow up with their primary care physician but I didn’t actually stress the importance of follow up and the possible repercussions. And really, I did know the possibility of these repercussions but not to the extreme that I am experiencing them now.
I didn’t truly know just how complex brain injury was until I experienced it myself.
I had been thinking about starting a blog on and off for some time but the task just seemed too daunting – I can’t read for very long and can’t stare at the computer screen for longer than ten to fifteen minutes every several hours without producing debilitating symptoms. Each day is so energy draining as it is. How could I possibly accomplish this and see it through?
I have been very reluctant to share my story and haven’t spoken openly about my injury and the struggles that followed and continue today. It’s extremely difficult to be completely vulnerable and express what I’ve endured for a few different reasons. These are some very dark days to reveal. With the injury comes a great deal of guilt and shame because it seems like you are trying so hard and doing everything you’re told but still just cannot progress like you want to. This recovery somehow feels like a moral or personal failing.
I don’t want anyone to feel bad for me and really just attempting to fully explain it to others is draining in itself. Only a few close people in my life know the depths of my recovery and what I have experienced. Keeping my story and journey private is due to several things – not wanting to worry others or let people down, not wanting others to feel bad for me, feeling shame that I am still going through this recovery. Sharing my story openly is a very uncomfortable feeling but the end goal of helping at least one person in the process is worth it.
I paint sometimes to get lost in something and to express how I’m feeling in a way words just can’t. As it is nearly impossible to truly put into words what every day feels like in this recovery, I painted this as a means of this expression.
Among many other symptoms I experience on a daily basis, brain fog is one of the big ones. This is one the most common symptoms of concussion. You feel like you are slowed down, in a fog, in a haze, not yourself.
One day I sat, frustrated, sad, anxious and thought maybe I should try to release this through a painting. And bit by bit, my painting came together…an outpouring of all of these feelings.
After painting this, I realized that I should just do it – share my writing and start this blog. I have struggled with the feeling like I am not contributing much to this world right now. Shortly after I painted this, it hit me – I should use my writing to contribute and hopefully help at least one other person no matter the hurdles in the process. I looked at my finished painting and it was raw and deep, a depiction of my recovery.
And so the name of my blog was inspired by my painting. Lift the Fog – that is what I would call it.
This is a message of lifting the fog – of traumatic brain injury misconceptions, concussion stigma, but also providing some clarity for those struggling in silence, who feel alone.
My hope is that my experience can lift the fog and cultivate the compassion and awareness that is needed to aid in this silent epidemic and bring hope to those suffering.
This is my first step to being part of the solution. Whether you are living with a brain injury or are the loved one of someone who is, may you find ways to better support, educate and spread awareness and better your life in the process.
Feel free to share in the comments below or connect with me here.
My name is Drew Chernisky. I started this first post diving in really deep into my recovery but I stopped myself and realized that is definitely not me. I am not a diagnosis and I am not my brain injury – something I am still working on.
My name is Drew Chernisky. I started this first post diving really deep into my recovery but I stopped myself and realized that is definitely not me as a person and certainly not my identity. I am not a diagnosis and I am not my brain injury – something I am still working on.
I am 30 years young and a Cleveland native. I am the youngest of ten children. Sometimes, jokingly, I am referred to as “number ten,” though to this day I am still mostly referred to as “baby Drew.”
Growing up, we lived in a house with a lot of land which was great for any and all sports. My siblings and I would form teams and play a little bit of everything – running bases, wiffle ball, baseball, basketball, street hockey. It was because of my older siblings that I got into sports, but specifically, ice hockey.
Flashback to my early years. My first skates were laced up when I was just three years old. I would never look back; it was quickly ingrained into my being. It was a part of me then and is still a part of me now. I admit I am still wrestling with my relationship with ice hockey because without it, would I be in the condition I am in now? Would my life be forever changed?
Growing up, I traveled all over the country playing ice hockey and frequented Canada a lot to play in tournaments. It was something to always look forward to – the road trips, bonding with teammates, locker room music, endless snacks, playing mini hockey in the hotel hallways until we got in trouble for “making too much noise.” This passion took off like wildfire.
I played boy’s hockey up until bantams and then joined an all-girls team which I played on through high school up until my senior year when I transferred schools to play on a team which really prepared me for college hockey. My first two concussions occurred during high school hockey.
I played college hockey at Salve Regina University and studied biology, chemistry and music. Hockey was always that constant thing that kept me grounded. I sustained three documented concussions during my college career. The key word there is “documented.” I would later find out that the constant thing that grounded me was also the same thing to change…everything. I felt suddenly uprooted.
I spent most of my free time devoted to my friends and family and maintaining those relationships. Besides hockey I spent my time traveling, going to sporting events (mostly baseball and hockey games), concerts, working out, getting lost reading a book, playing my violin and making music…the usual things a twenty-something year old would enjoy. Where I’m at now, these seemingly little and easy things were such a luxury then.
After college I took a year off to study for medical school and gain some experience. I traveled to Kenya where I volunteered in a hospital and an orphanage. When I returned, I worked as a medical scribe in a local emergency department.
I decided to go the physician assistant (PA) route. It was a dream come true when I was accepted. I obtained my Master of Science degree in Physician Assistant Studies at Ohio Dominican University. After graduating, I landed my first job at the Cleveland Clinic in the emergency department. This was another dream come true. This is where I worked for nearly three years up until my life-changing injury.
During the time period between college and becoming a PA, I only played pick up hockey maybe two times total. It wasn’t until randomly that I found a local women’s team to play on in 2016. The team was Team CLE, consisting of former college athletes and those who just wanted to have fun. And that’s what it was – fun. It was something I craved on the weekends, something to just completely turn off my mind and get away. It was the perfect outlet. Then my world changed.
October 13, 2018, I sustained a concussion in an ice hockey game. Since that time, I have lost my job, seen countless specialists, traveled all over to seek treatment, and there is still no set time frame for my recovery. In the past 27 months I have been to 275 appointments plus one week in Georgia and one week in Chicago for brain rehabilitation. I have been prescribed around 20 different medications with very rough side effect profiles and tried countless supplements. I have lost a lot of my independence being unable to drive and work.
I have experienced many dead ends but have also encountered some positives and met some great people and providers along the way. I will explain what has helped me thus far and what hasn’t. Some of the treatments set me back big…like hospitalization big, but maybe you could also learn from those too if you are considering one of those routes.
If you are suffering from a traumatic brain injury of any sort or the aftermath labeled post concussion syndrome, you may be feeling alone, disheartened, helpless, hopeless, terrified. You may be wondering if you will ever be the same again. If you know someone suffering you may be wondering what exactly that person is experiencing because it is so difficult to articulate and you may be wondering how to be there to support them. This is a learning process, for both the one experiencing the injury but also those supporting them. I am continuously learning something new about my own recovery as time goes by.
I hope my personal experience enduring this recovery can shed some light and also that my background as a medical practitioner can provide a unique perspective. My hope is that my experience with many different treatment modalities may guide you into a direction you may have never considered and maybe one that could spark your recovery into an upward trend. At the very least, may you feel a sense of community and connection.
If you are the loved one of someone struggling through this recovery, know that a little empathy and compassion can go a long way. What you see on the surface is never the whole story.
Every word is filled with what is left of me.
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