Disability Stories: Post Concussion Syndrome

I am a registered nurse; a sister; an aunt; a daughter; a friend; a partner; a graduate student. All of these roles that I assume on a daily basis guide me throughout my practice within health care and the Master of Nursing program that I am enrolled. In April of 2018, shortly after finishing nursing school – that sense and feeling of being bright eyed… Wanting to change the world… I encountered one of the worst days of my life. I sustained my fourth concussion.

Now, I’m not much into novel sports, or snowboarding (though I did plan to go). I didn’t trip and have a subsequent funny story to tell. I was living through my daily life. In health care, we talk about concussions, however, there is a population of individuals who fall through the metaphorical cracks of the system. In Canada, there is nationwide health care. I can see a doctor or visit the emergency department for no cost. The costs of such are embedded within the taxes I pay each year.

I am no stranger to concussions. I had injuries before – I knew that I would feel like I was in a fog for a few days, would be exhausted, and basically sleep all day. I couldn’t stare at phone screens or do anything productive, really. Strictly, under doctor’s orders, I wasn’t allowed to watch television, to use my phone, to read, or drive. I was basically bound to my bed. The first few days of my concussion, I slept. I was awake for a total of five hours within the first few days. Prior to this, I would only get around three to four hours of sleep each night. I knew that something was wrong. My symptoms prolonged longer than they had before. I would have migraines daily, sleep all the time, be in this sort of fog, I couldn’t remember events or specific words, and I couldn’t walk for over 20 minutes. I had a couple trips to the emergency department, urgent care, weekly visits with my general practitioner, and visits to my specialist.

I was diagnosed with post-concussion syndrome in late June. For those of you who don’t know what this is: although the immediate period following a concussion is gone and my brain appears stable, I still experience the same symptoms as if I were to have a concussion that had just occurred. Post-concussion can also cause irritability or a fluctuation of emotions. I am still sensitive to light and more so, to sound. The thing about post-concussion is that there is little research done about it.

What were once considered antidepressants are used to help people like me sleep (and stay asleep) throughout the night. There are also treatments: vestibulocochlear therapy. However, there is limited evidence and even in Canada with our universal health care, these treatments aren’t covered. They’re expensive. There are few individuals who are able to administer these treatments and it’s also several hundred dollars to complete one session, and the minimum number of sessions is 2.

Late August of 2018, I decided that I wasn’t going to let my brain injury define me – I entered into my Master of Nursing program. Now, no one talks about disability of those providing care or within the confines of the institution of college/university. I haven’t heard in the media about a registered nurse who has had significant deficits, but they strive to continue on. I felt like I was in the wrong place. I felt like I couldn’t do my masters. I felt like, with my brain injury, I wasn’t a registered nurse (even though I am).

My brain injury does not define me. I can still remember the progression of a disease – it may take me a few moments to decipher specific words or phrases that I’m trying to say… but I can still do it. I can write lengthy papers, however, at times, with great difficulty. With the support of my faculty supervisor, my professors, my classmates, family, friends, and partner, I know that I can complete my Masters. Most of the time, it’s not easy doing a graduate level program (or any program) with a disability.

Disability of those providing care is important to talk about. How do we advocate for those with post-concussion syndrome? How can we be more empathetic to individuals with any invisible disability or illness? How do we support our colleagues? Our daughters? Brothers? How do we support them to be the best version of themselves within their practice? How can we empower them?

I am lucky. I work at the University as a graduate assistant in both teaching and research. The professors I work with believe in me. I am happy to be alive. I am happy to feel the sunshine each morning (even if it’s snowing) and greet every day with my tenacious being. It’s time that, we, as people in health care, and individuals around the globe, become informed about post-concussion syndrome. It is our ethical obligation to mitigate the issues many individuals with this condition face. It is in my hope that research would be advanced where we have more solidified treatments for those with post-concussion.

If you have gained anything from this post: know that with whatever you’re going through – anything mental health related, post-concussion syndrome, physical illnesses – you are not alone.

Here’s a link if you want to find out more about post-concussion syndrome: https://concussionfoundation.org/PCS-resources/what-is-PCS