Everyday life, especially these days during the pandemic, can feel like we’re adrift in a rapidly flowing river that we don’t have control over. Challenges come at us from all directions without warning. When your child tests positive for COVID, it means all plans are put on hold or canceled.
At this point, AS is about managing the up and downs. Too much and too little activity has consequences. Holidays have the potential to feel like those wild river rapids that can toss me into emotionally charged situations that could be physically energizing or physically draining. The self-image I grew up with was to play down and control my emotions, so I’d like to think that emotions are just a nominal factor with AS. I’ve learned that emotions do play a role, both supporting and challenging my AS. For me, I need to actively remind myself of this and to take stock of my emotional status. Simply put, I feel physically better and take better care of myself when there is more laughter in my life than despair. I need to remind myself that emotions are also an empowering tool for self-care and health.
In 1993, a week before Christmas, I got a call from my brother in England that he had hidden that he was terminally ill, that he needed me to come to live with him so that the hospice would release him to his flat. Looking back on that experience nearly 30 years later, that was the worst and best holiday. As terrible as it was, and it was truly tragic, I’m full of gratitude for him and for every bit of the time we spent together. Checking him out of hospice and celebrating with hot tea in his flat felt like a successful prison breakout. A loved one crying themselves to sleep is heartbreaking. Spending Boxing Day with his best mate’s family was joyful and precious. Life threw me into emotional rapids from the moment I got his call. On my first night in his flat my wife told me that she was pregnant; more rapids. I was home with her for New Year’s. Every New Year’s is bittersweet when I light his memorial candle while also turning my attention to the joy of the season.
We don’t control the rapids. We do control the paddle. I can make every river current a battle struggling for breath or acknowledge the challenges and flow with it in grace. It doesn’t mean I like the challenges. It means I try to fully see the challenges and do my best to navigate with them. I learned that taking care of myself by exercising, eating healthily, and trying to sleep, enabled me to be there for my brother. The last thing he needed was for me to be disabled by a flare.
There are two things that I do for these emotionally charged situations. First, I prepare. I keep in regular contact with my network of trusted support that includes friends, family, spondylitis support groups, clergy, and health care professionals. I also prepare by practicing literally being in challenging positions. Learning to slow down my breath and thoughts while balancing in a yoga pose is practice for life’s challenges off the mat. Second, while in the emotional rapids I try to find an even breath, clarify my thoughts, and tap into the wisdom of my support team.
Wishing you a very happy and healthy holiday season.
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