A woman runs away from a shadow beast on the grass; its tongue is her escape route.

The Mental Side: Finding My Escape from AxSpA at the Hockey Rink

The door opens and the first thing I noticed is the air on my skin. Crisp and dry, it is cold inside. Then, the smells are noticed next. It varies from day to day and place to place, but they only belong here and nowhere else.

Many times, I feel an electricity or a tension in the air, but these days that sensation is absent and I miss it. Every place is slightly different, but the same atmosphere and feeling is the same every time I enter through the doors. The hockey rink is my place of solace.

From the moment I walk through the door to the moment the final buzzer sounds, AxSpA does not matter.

Throughout the majority of my days, AxSpA is at the wheel. It’s controlling my every move, and usually hitting the brake pedal far more than the accelerator.

At the rink, AxSpA takes the back seat

When the puck is dropped and the game is on, nobody cares what you’re going through. They only care if you get your job done. As the referee, every decision I make is scrutinized. There is no margin for error, although public opinion would likely say nothing but errors.

Sure, my warmup is different from most others’, and during the game, you might notice see me doing odd movements to keep my hips from seizing up, but it doesn’t matter. Everyone is battling through something during the game, a taped wrist or ankle, fatigue, a major slump, none of it matters within the 200’ by 85’ confines of the playing surface.

Hockey is an escape

I vividly remember the weekend I received my diagnosis of nr-AxSpA. It was a mental whirlwind. I had never heard the term before and there was a lot to wrap my head around. The rheumatologist broke the news to me on a Tuesday morning. Wednesday night I was scheduled for a game about an hour from home.

For the drive to the rink, which is often done with my crewmates, I was alone that day. It was quite therapeutic. Amidst all the mental chaos of trying to understand the implications of the words non-radiographic axial spondyloarthritis, I slid into a familiar routine and it caused a much-needed distraction.

When I walked into the building and was met with all the familiar senses of the rink, for the next few hours I completely forgot about all the mental angst that the previous 24 hours had created.

Living with nr-AxSpA can become very mentally exhausting. My pain often creates mood swings and strange changes in my behavior. There is no rest from it, no days off.

That is why I find it so important to have an escape, a place where, for a few hours, AxSpA does not matter. For a few months during the winter, my place of escape was taken away due to the pandemic. I struggled, as I’m sure many people have throughout the course of this past year.

It helped me to realize two things to move forward with

Firstly, I realized how important the hockey rink is to me. It is a catalyst to manage my lifestyle in a healthy and positive way, and having a place to get away for just a short time is incredibly impactful.

Secondly, I must continue to seek new places of escape. Other activities or places that used to serve that purpose for me no longer do since my diagnosis and they are going to be important for my mental health moving forward.

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