I’d like to begin this blog post about finding a routine with a picture. I know, I know, starting a post like this is out of my normal routine. That’s the point. In this picture, you’ll see my Beads of Courage. There are quite a few and each one of them represents a medical event in my life beginning at fourteen years old. Each bead color has its own meaning; from an IV to surgery, these beads symbolize strength when normal isn’t normal. Now you may be asking, what does this have to do with routine? I’ll tell you.
My health started to decline when I turned fourteen. From that moment on, every single moment felt like whiplash. Going from sleepovers to overnight stays in the hospital, I felt like I had nothing to depend on. I had absolutely no routine in my life; nothing was normal. Many people in my life at that point would talk to me about the importance of having a routine. The common examples were a bedtime routine, a morning time routine, and a hygiene routine. Here’s the thing, all of those examples felt impossible to create a routine out of.
There were quite a few days, especially during the first two to three years after getting sick, that I would wake up and spend the majority of my day in bed as a result of the pain and fatigue I was enduring. On the other hand, I would push myself far too hard and by the time the evening came around, there was no energy left to spare for something as little as brushing my teeth. Beyond the morning and night, the activities of the day were never promised.
I couldn’t always rely on going to school, or hanging out with friends, or other teenage activities. I had so many doctors appointments and flare ups that had the opportunity to land me in the emergency room. As you can see on my bead strand, there are a considerable amount of blue beads and magenta beads; blue means a doctor’s appointment, magenta is an ER or Urgent Care visit. Any kind of event I would be looking forward to felt like it could be ripped out from underneath me at any second. Long story short, routine was not a word in my vocabulary.
Eventually, I figured out that anything can be a routine and it doesn’t have to rely on a sequence of events. The rigidity of morning, night, and hygiene routines was never going to work for me. Routines similar to those take energy that I don’t have. However, routines like Grey’s Anatomy every Thursday at 10PM are doable and enjoyable. Finally, I had something to rely on.
My morning, night, and hygiene routine look different from an able bodied person’s routine. That’s fine. My routines can be low effort and still benefit me. All that matters is they are reliable. Even if I am relying on Abbott Elementary and Grey’s Anatomy. Once I started learning to stop comparing my life to someone with very different access needs, I started learning stability and flexibility.
I still can hang out with friends, have sleepovers, go to school (well, up until I graduated). It’s just not a routine I rely on. Learning not to rely on things I know aren’t reliably going to happen was incredibly helpful. I can’t rely on my ability to go out on a walk or brush my teeth. I can rely on Meredith Grey and Janine Teagues. Find your routine; even if it is a nap or a rest period. The routine doesn’t matter, the way it benefits you does. Beads and routines can coexist together.
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