Post-TBI Isolation

silhouette photo of woman

I remember the first Thanksgiving following my concussion. I didn’t realize that this occasion of coming together could be so dark, painful and even more isolating for me. 

As a fresh reminder, I have five brothers, four sisters, seven nieces and eleven nephews. So, you can imagine just how big some of our family gatherings are. My very large family piled into the house. Just greeting everyone produced a lot of anxiety and required all of my depleted energy. I was so troubled by my vision that I felt guilty for not being able to maintain eye contact and having to look away frequently. It was so painful and that is still an issue I experience to this day. 

It didn’t really occur to me to mentally prepare for the occasion, maybe partially because I was still in denial about my injury and because I hadn’t fully understood what was going on inside my body at that point. I figured it wasn’t a gathering with strangers so it would be completely comfortable and enjoyable.

As more and more people arrived, the more and more stimulation I experienced. I was having a difficult time processing the noise of the various conversations and the movement of people in the house. I felt like I was going insane attempting to maintain a conversation while hearing all of the background noise on top of the ringing in my ears. I kept going up to my room to hide in my bathroom to get away from it all for brief moments. Why can’t I even enjoy my family’s presence? It’s not like I was mingling with strangers. I could feel myself shutting down, breaking down. 

Because of the amount of people at Thanksgiving, we had several very long tables set up and connected together. I took my seat at the table and looked around at everyone conversing, laughing and enjoying the moment. I wanted to experience that but couldn’t. Everyone started eating and just hearing the silverware clinking on the plates began to hurt my ears. The tiniest movement of someone bumping the table or moving their chair caused me to feel so dizzy and nauseated to the point I felt I was going to throw up. I felt too embarrassed to ask everyone to stop nudging the table so I didn’t speak up. 

I couldn’t enjoy it. I sat at the table surrounded by my large, loving family yet felt so alone. I was physically there, but almost felt invisible. I felt so removed from myself.

Of course, many of the conversations I engaged in included questions about how I was doing and feeling. I said I was “okay.” This was the easy response that took up the least amount of energy. I was told I “looked good” or “I looked fine.” While I may have looked “good” on the outside, I was certainly not feeling good nor did I feel fine. This was so troubling to me – the external invisibility of the injury – a theme that has played over and over throughout my recovery. There’s really no external sign of what I was and am going through. 

After the meal, everyone gathered at the table to play some games. I sat and watched. I smiled to essentially “play along.” This was just a lie to myself and everyone there. I didn’t want to draw any attention to myself nor did I want to be a downer. The games started to become more energetic and the environment became so loud. 

There was a lot of movement at the table; it felt like it was constantly moving or vibrating. I became so dizzy and nauseated that I finally had it in me to speak up and ask if they would stop bumping the table. I felt embarrassed and also crazy for asking this because it was something that was so subtle and probably not even noticeable to everyone else. Pre-injury, I would have never noticed it.

I continued to watch. The longer this carried on, the more symptoms I developed. The longer this carried on, the more disconnected I felt. It was so disheartening to me because this was my family who I was supposed to feel comfortable with. It never crossed my mind that I would experience this with those really close to me. Questions started popping up in my head. Will I ever be able to enjoy this again? When will I feel like myself again? Will anyone ever fully understand what I’m really going through? Where do I belong anymore?

Everyone left and I went to my room where I sat in the dark, holding my head. Crying uncontrollably, I continued to suffer in silence. 

It felt like a nightmare and I so desperately wanted someone to wake me up. 

Not Ready to Admit Defeat

woman looking at sea while sitting on beach

November 9, 2018

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.

Memory Issues

blurry photo of green trees

November 6, 2018

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.

Why Is This Happening?

monochrome photo of person standing on hallway

November 3, 2018

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?”

Normalcy Slipping

The Week of October 22, 2018

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.

Me in my “stylish” orange lensed glasses looking like a conehead at the gym