Two years ago, Michael wrote about his battle with PCS. Today, Michael has written a follow-up of his continued battle with Post-Concussion Syndrome and the struggles he faces in achieving government support.
Hi, my name is Michael Corneau. It is May of 2019, I’m 20 years old, and since October 15th, 2016, I have suffered every single day with post concussion syndrome (“PCS”) due to a traumatic brain injury (“TBI”) I sustained during a hockey game. In 2017, the Concussion Legacy Foundation featured my story which can be viewed on their webpage at the following link: click here. In that article, I wrote about my early experiences with my concussion and about the many ups and downs throughout that period of time. Two and a half years of this rollercoaster ride brings me to write this update. Think of all you have achieved in the last three years, the experiences you have had, the money you have earned and the relationships you have cultivated - old and new. For me, the answer to these questions is simply … none. My life was put on hold in October 2016.
One thing that bothers me more than anything else, that’s come along with this whole ride, is speaking to people who don’t quite understand the severity or impact this truly has on my everyday life. People do not understand the long-term impact PCS has on me and the endless treatments I have tried. I can’t blame them though, it’s an extremely complicated injury, that you can’t see from the outside. A broken bone generally has a short, fairly precise recovery timeline with a visible cast or crutches, a cut or a surgical wound has visible stitches and the loss of a loved one is directly related to visible grief. How do I explain what my daily struggles are on a regular basis, and expect people to understand? I can’t, but I try. The loneliness some days is crushing.
On days where my symptoms are worse than my average, I can barely make it through a trip to the grocery store without feeling the repercussions. Moments like that, where I can’t accomplish a simple task, are very frustrating and depressing. It makes littles chores that I need to take care of, into nearly day-long projects, due to downtime I need to take in between. There’s nothing that can prepare you for the lifestyle change I’ve had to go through. Right when I feel I’ve made forward motion, it seems that shortly after I’m thrown back more steps than I advanced.
My TBI occurred in my graduating year. I started Grade 12 in September, 2016, was injured in October, 2016, and have not been able to go back to school since. I am now 20 years old with a Grade 11 education. I have some good friends that have remained in my life and when I get moments to catch up with them and talk about the time apart, I am constantly reminded that I haven’t made progress for my future. I haven’t even graduated high school, but my friends that I was supposed to graduate with, are finishing their sophomore year in post-secondary, or are gainfully employed. Unfortunately, with my recurring symptoms, it is nearly impossible for me to commit to a proper work or school schedule, even with flexibility and accommodations that we’ve tried to make.
This injury runs my entire life - it dictates how I will feel, what I can do, how I sleep, family time, social life, you name it. It’s a constant weight on my shoulders. Where do I go from here? Will this feeling ever change? I know things could be worse for me, and I’m grateful that I’m still here but sometimes the gravity of all that has happened to me brings me to tears. During those darkest days, my mom comes and sits down on my bed, rubs my forehead and tells me it is all going to be alright. The love in her eyes is always shaded with worry. This is our new norm.
Naturally, human interaction is necessary to live a sane life, whether it’s for light conversation, new perspectives, or placing an order at your favourite restaurant. I can’t help but to acknowledge the seclusion I’m facing, away from my normal life. A feeling of loneliness, creating a darkness surrounding your mind with negative and unclear thoughts. Your own mind becomes your worst enemy, with thoughts that can plague your positivity, suffocating yourself with questions that are fabricated by that negative energy. After having everything taken away, removing the social life I used to have, the sports I used to play, my plans for a future, how do I fill that void? I wish it was as easy as just finding new hobbies, but it just isn’t.
Obviously, here I am, capable of typing these thoughts out for short periods at a time, but still to this day, I am very limited with concurrent stimuli. Whether it’s the weekend and I help my mom with errands, or it’s a holiday and I see some family or friends, I find my symptoms are amplified, rendering me incapable of doing anything exerting for days after. I wanted to touch on this because weekends for most people are spent in your social lives, doing your cleaning and grocery shopping, or just anything you may not have time to do during the week. Mine are spent resting enough to go to the grocery store then coming home or seeing some friends or family, then sleeping for 18 hours.
Think of this as your fight or flight response. For example, you have an important meeting, interview or presentation. Your body has a fight or flight response, sometimes your palms will get a little sweaty, heart beats faster, scrambled thoughts, even tightening muscles. Subconsciously, your body is assessing the situation, figuring out the most efficient way to overcome the obstacle. You will either avoid it and flee, or you will face the upcoming task. When you are in a post-concussive state, dealing with symptoms long after the brain injury, this is how I perceive everyday tasks. My brain is “stuck” in this flight or fight mode - my brain is always scanning for dangers so there is never peace of mind nor does my body release the stress of the perceived dangers. At home, there is quiet and safety. It is just my mom and me.
In all likelihood, if you or someone you know has ever had a concussion, you know most of the common effects. Generally, if it’s your first, then you were likely told to stay away from stimuli to let your brain rest and heal. Within 4 weeks, the odds are that you have healed and returned to your everyday life. Mine used to be hockey, family, friends, and then probably hockey again, but that was taken away from me in my last injury. A blindside hit to the head put an abrupt stop to everything I normally knew. So now what? I’m mentally and mostly physically incapable of working regular hours, I have a very hard time sitting and reading/writing, and even seeing family and friends consistently. Short highs and very long lows. I’ve spent the vast majority of my recovery time fighting to feel ‘normal’ again.
Eventually, since I’m only human, frustration and irritation set in. A constant cycle of “hopefully tomorrow is different”. I like to think it’s given me time to practice patience, to have faith in the process, but there are days where it’s not as easy as taking a deep breath. When you feel like you’ve put your all into a recovery that is very hard to control or accelerate, it feels very defeating. It has made me into a dependent adult.
I was prescribed medication in the form of pills at the beginning of this, and nearly every single day, I need to take a handful at dinner. No matter what, it has to be taken. Why? Well because of the pain and chemical imbalance in my brain. Pretty straight forward right? Not exactly. These medications have such a heavy impact that I cannot go a day without them. My body will actually shut down and go into severe withdrawal. Let me clarify. I got injured, needed medication to help cope and recover easier, to which I was then prescribed the bulk of my pills I still take presently. When my symptoms worsen, I get more pills. Well a couple quick “fixes” and here I am. My symptoms are “managed” under a chemical blanket, one that I would have a hard time living without.
I have tried most therapies available to me, with only temporary relief and then a noticeable worsening shortly after. Countless hours of effort, planning, and a little luck on my side have gone into going through these appointments. The little bit of luck because as things worsen, it becomes much harder to make it to these all over the city. To list a few of my symptoms I encounter regularly, severe head/neck pain, anxiety, constant muscle/brain fatigue, and depression. Unfortunately, all the symptoms fluctuate based on the stimuli and the way my brain is handling it. I have participated in some concussion-based studies to assist in research and to bring awareness to this devastating injury and my hope that it will help others in the future. My mother and I speak to as many people as we can to try to find new treatments. The latest option is a $4,000, 9-week treatment plan at a Brain and Spine Clinic. This treatment is not covered by insurance and is not scientifically proven to work. So why would I try this? Because there is no one treatment, no one pill, no one doctor who can “cure” me. I have exhausted all paid-for treatment plans and it is now time to delve into the costly unknown. What works for one person does not necessarily work for another. If not for the limited resources of a single parent, I would try anything that could possibly give me my future back.
I’ve never been one to compare myself to others, because that creates an unrealistic, inaccurate version of yourself. I’ve never been one to belittle someone based on their problems, comparing theirs to mine. But sometimes, I need a little help. There’s only so many things family members and friends can do to help out and facilitate daily tasks. I’ve tried working, I’m unable to do so consistently, and generally that doesn’t work with an employer that needs you to fill in hours. So where do I get money? I mentioned I have become a dependent adult earlier. Our government assistance programs? No, my mother. She works tirelessly to support me including working as much overtime as she can without leaving me alone for too many hours at a time. She covers all the costs of things that I need to pay for, because that’s the person she is. You might think, well parents will always want to help their kids. That is true. But if my mother is required to support me 100% as an adult, does that not mean I should qualify for government assistance, or that she should? Again, no. For the past year, we have submitted applications both federally and municipally for disability coverage. Every few months, I receive a letter indicating that my claim was denied and that additional medical information is required to show a “prolonged and recurrent disability”. So, we start the process over again with more doctor visits and updated medical reports. We have done everything asked of us and submitted updated reports as soon as requested, then the next letter comes. Again, more medical evidence is required to substantiate a “prolonged and recurrent disability”. So back to the doctor and new medical reports. Can you see the pattern? I was not deemed “disabled” enough to qualify for any financial assistance. Nothing like a gut-punch, mailed in to me, informing me that what I am going through, every single day for almost 3 YEARS, is not valid enough of a disability. It’s truly deflating, spending as long as I have feeling this way, knowing that our own government has neglected me.
I wanted to write this out, to project some of my thoughts into words, on a page, for people to have an inside look at this long road of recovery. It’s not too complicated, I’m in discomfort every day. Whether it’s muscular pain, anxiety and/or depression, there is always something to remind me that my life is no longer what it used to be. I’ve heard it a million times, “you just need to find your new normal”. For now, my new normal is this.
At the end of the day, I’m still here, with a support system that has pushed me forward every inch of the way. I hope that if you take away anything from this, it is to just be there for those who need you, in any way you can. Anything makes a difference. I can’t thank the people in my life enough for the help I’ve been offered, because there is a very slim chance that I’d still be me without them. My mom especially, she will do anything for me not to worry about what’s next, and truthfully, I have no idea what’s next.