Hospitals make me feel uneasy. Something about the atmosphere and clinical hallways feels uncomfortable.
It’s the beginning of 2019 and wires are stuck to the top of my head. I feel like I’m being plugged into the matrix. I’m told to lay down and close my eyes.
Bright lights flash on and off repeatedly.
Next, I slide into an MRI machine on my back. IV in my arm and head firmly locked into place. If it didn’t feel serious before it does now.
It’s surprisingly loud and claustrophobic.
My mind races. I’m thinking the tests and this big machine over my head aren’t going to show anything. I had convinced myself that the sporadic feelings of déjà vu that I was experiencing, that brought me to this point, was just a minor inconvenience that wouldn’t bother me again. Even though when it happened, it disoriented me and dropped my stomach like you’re going down a rollercoaster, it was just something that was going to pass.
The neurologist sits down with me pretty much immediately after the tests. As she began talking, I tried to focus on the purpose of the testing, what it can show, but my mind couldn’t process any of the information I was hearing. I could feel something was deeply wrong, I just knew.
Then my world changes.
The doctor tells me there is a portion of my brain that is not symmetrical, when it should be. The déjà vu episodes are an early onset focal epilepsy called an Aura. It may get worse with time and develop into what people typically think Epilepsy is – physical seizures that make you pass out.
***
Me and my girlfriend just bought our first home. I’m around a year into my first ever corporate role, I’m leading a great team and an 8-figure project that was critical to get right. My career up to this point was in stores, working my way up from an associate to store manager. Toronto was still new to us and moving between 3 cities in the same number of years was draining. Roots were being created. We were thinking about home renovations, travelling, our two dogs. Blessed to be comfortable and grounded.
The neurologist leans forward and gives me two options.
Option 1. Take medication to counter the Auras that is proven to be effective, for at least the next seven years. Has a laundry list of side effects and affects you so significantly that you have to ease into the dose size that I need.
Option 2. Don’t take the medication. Lose my driving license due to risk of seizures getting worse over time. Potentially harm me and/or others because of the more intense episodes that can happen at any time.
This was not a decision I was prepared for.
***
I took the meds. I kept the circle of knowledge small. I thought if I kept this all to myself and bottle everything down then no one will notice and its like it never happened.
The medication, called Lamotrigine, gave me the declared side effects almost immediately. A rash that made my whole back red for a few weeks, emotional outbursts over mundane things, short term memory issues and ability to maintain concentration for extended periods of time. It didn’t feel like medication, it felt like poison. I quickly resented taking it.
Our life priorities dramatically shifted. Health and each other quickly outranked everything else.
It didn’t feel like medication, it felt like poison.
If I tell anyone else will they view me differently? How do I even explain an “illness” that is “hidden” and hard to describe even in the best of times. It was really really hard to come to terms with the situation. I lost self belief and even at times a level of risk aversion.
Hiding all these feelings at work were sucking up a lot of energy too. For a couple of months, I would come home from the office, eat dinner then go straight to bed.
Deep down inside (and it took a while to come to this point) I wanted to regain my confidence and energy. I wanted to regain joy.
***
I have always believed in the saying “Focus on what’s within your control”. That mindset has guided me through challenging situations before. What was stopping me from taking my own advice? Was it just the pure irony that I should go through this experience and come out of it more grateful? It was really easy to wallow in self pity. But I realized I actually am so much more grateful for what I took for granted: a loving partner, family, friends, and even being alive.
I then had the wake-up call internally. These feelings and state of mind are simply not healthy. My self-destructive energy turned into drive.
***
When I changed how (not what) I think, I recognized that joy is not about the big moments. It is about the frequency (no matter how small). That warm rich coffee in the morning, the feeling after a good workout, laughing with friends, seeing a team member excel, scoring a goal in sports, etc. It does not matter how mundane it may seem.
When I shifted my mindset to pay attention to moments of joy and think often about what I am grateful for, I found more peace.
When I changed how (not what) I think, I recognized that joy is not about the big moments.
***
As a result of this experience I know deep inside that I am a better partner, coach, Walmart associate and human because of this experience. I still take the medication but my body (and mind) have found a way to manage the side effects. It’s become my normal.
This is not a story about epilepsy. It is a story about resilience and shifting mindsets to overcome.
The key learnings and takeaways have been:
- You are not alone. There are always people out there going through the same thing. I stumbled across some reddit forums and joined in the conversations with people who were new to the situation I found myself in or even extremely experienced. There were even memes that made me laugh!
- It could always be worse. All the thoughts I was having internally were exactly that – internal. The only one who beats me up is me. I must give myself positive energy and realize that none of this is my fault (it is no one’s fault).
- Look after yourself. I love the ideology behind Arianna Huffington’s Thrive movement – “put your oxygen mask on first.” I realized quickly that I cannot start working at 7am and finish at 6pm anymore. It is simply not healthy. My “micro step” (something too small to fail) is to drink a bottle of lemon water everyday.
Tangible things I do right now at work to help with mental wellbeing and resilience:
- I do not send emails past 6pm. I now recognize it is not a badge of honor to be up late sending emails. If we are in a crunch I hit delay delivery so I am not sending a message that is more than just the content of the email. I have told my team I will be disappointed if I see emails from them after 6pm. Boundaries are important. It has been highly effective.
- I have more hard conversations. Caring about people means telling them what they don’t see and building their resilience with them. Sheryl Sandberg says in her great book Option B “We’re not born with a fixed amount of resilience. It’s a muscle we can build”. There is another excellent book on this topic called “Honest to greatness” by Peter Kozodo – highly recommended.
- Inspiring a level of hope is more important than ever before. This can come from making wellness and health a priority (starting every 1-1 meeting with this topic) or even talking about what we are excited about for the rest of the year (specific vacation time, a key family birthday/event, etc). Hope is not a strategy but it does promote clarity and empowerment – more important now than ever.
I hope that by opening up about my struggles it allows you to feel like it is ok to do so. To stop using time and energy to hide things, to allow us all to be more open professionally and personally. Loss, tragedy, sadness, disappointment – all feel incredibly personal when they happen but they are also very universal.
Life is beautiful but it’s so vital to enjoy what you have. Put everything aside and look around every so often. Cherish the people in your life. They need you more than you think.
I still don’t like hospitals – even though I must visit them a bit more often. While I still experience minor side effects from the medication, I now have stronger mindset, resiliency, and optimism.
This article originally appeared on LinkedIn.com