How My Illness Woke Me Up to the Life I Wanted to Live
We, as humans, are creatures of habit. Sometimes if we are not careful, we can get lost in the daily hustle and bustle of our lives and the schedules and routines we have created for ourselves. Now, I'm not saying that having routines and schedules is a bad thing. In a lot of instances, they are necessary. But what can sometimes happen is that we get so consumed by these habits and routines that we end up losing a sense of self and sometimes even miss out on things happening around us.
Living every day on replay
When I became a mom, I had a strict routine that I followed every single day. I would wake up, make breakfast for everybody, maybe get a workout in, tend to my children all day long, take them to school when they were of age, go pick them up from school, prepare dinner and go to bed.
Don't get me wrong, there was nothing wrong with this, but when I started experiencing my AS symptoms, it was as if someone shook me and woke me up from this “mombie” state I had been living in and told me to go out and live. While AS is the biggest burden of my life, it has also been one of the most eye-opening experiences I have ever had.
A small moment of realization
I'll never forget that Halloween in 2019 (3 months after symptoms onset) when I was walking around my neighborhood with my children and I gave my husband my phone and told him to take a picture of us in front of a blow-up reaper. He said to me: "It's too dark. You're not going to be able to see hardly anything."
My response to him was: “I need you to take this picture because this may be the last Halloween that I am able to walk and possibly maybe even be here. The kids will have no good memories with me.” He kind of laughed at the comment, but I don't think he realized how serious I was.
I think that was the moment it hit me that I needed to start living and break these habits and routines that I had lost myself in. I still had so much to do in this life, and it was time I started taking action.
A promise to live
A month later, I was diagnosed with ankylosing spondylitis. On that day, I made a promise to myself and to my children that I was going to start living intentionally. It wasn't going to be wake up, go through the motions, go to bed, and repeat anymore. I wanted to explore. I wanted to take them on adventures. I didn't want them to just remember me as "mommy was always sick in bed." I wanted to actually live and find myself and be there for my boys and create unforgettable memories.
We do it all
My plans were slightly derailed due to the Covid-19 pandemic, but as things started opening up, I started to live. We have been kayaking (which was a little difficult with AS), we have been on adventures in the mountains, we even bought a boat! Every weekend we find something new to explore, and we have made some of the best memories in the process.
My own self-discovery
There has also been a little bit of self-discovery along the way. I tell everyone I know that you're only given this one life to live, so why not do the things that bring you happiness?
A few things that I have found that make me happy are piercings (weird, I know), reading, and simply just living for myself and letting go of people's expectations. I am finally being who I want to be, and it’s honestly all thanks to being diagnosed with a life-long and life-altering disease. Funny how something awful can lead us to our most true and authentic selves and turn out to be a small blessing in disguise.
How much about your AS do you share with others?