My body changed very suddenly last summer- one day I was spending hours on foot exploring Mexico City, a week later I couldn’t even sit up. Nine months on, I’m back to sitting up (though I will be exhausted and nauseous if I attempt sitting in a chair without a back for any extended time), but I am nowhere near walking around anywhere beyond a few meters from the handicapped parking spot to the closest seat in a quiet restaurant. And while you might think buying a transport wheelchair to help me leave the house or obtaining a temporary handicapped parking badge would have been good indicators that my body now qualified as “disabled”, I imagine many of you reading this will understand that it was months before the realization set in.
Going from the picture of health to chronic illness and disability is jarring, to say the least and since then, I’ve been getting to know my body in different ways. The same things are important- food, water, sleep, some form of movement- but the context is wildly different. Before, meeting my body’s needs were more a means to an end so my body could do all the things. 16 hours in perpetual motion and a collective hour at “rest” (not really), full days of vacation chock full of soaking in everything I could, running half marathons with my best friend even when we were both massively undertrained…all go, all the time, with some yoga sprinkled in. These days, I spend 12-16 hours at rest and a collective hour or two (sometimes none) doing things. Now, my focus is on what my body needs to be at peace. What foods will sate my hunger, nourish my body and not trigger instantaneous nausea? Do I need to be sitting or lying down so my body isn’t overtaxed and heading towards a crash? How can I moderate the lights and sound around me to soothe my sensory system? All things that help me, eventually, do things, but the doing is a cherry on top rather than the goal. It’s wildly different from before, but there is a comfort and a sense of success in developing a new way of being that helps me be part of the world in a manageable and meaningful way.
After a few months mostly bed-bound, I realized that this might be a longer-term thing that I’d thought, but it was only recently that reality hit. Filling out the application for a permanent handicapped placard (my temporary was set to expire) and wondering when to buy an electric wheelchair so I could have any independence can really snap things into perspective. Given my symptoms, it’s not unlikely, that I will deal with at some degree of chronic illness and disability for the rest of my life. So while I come to terms with that, I get to know my body a bit better.
Like making a new friend, I try to find things old and new me have in common. We both love to read. We both love celebrating our friends and family. We love exploring foods and cultures and learning new things. We love yoga and tea parties, the Great British Baking Show and quaint murder mystery tv shows featuring clever older ladies who always know best. I try to fill my rest time with things we both love. I’m currently on season 5 of Murder, She Wrote and I read multiple books a month (sometimes a week, depending on my brain’s stamina). While I can’t always attend in-person celebrations, I have started knitting hats and baby blankets and scarves to send to family and friends to celebrate birthdays, new family members, an amazing basketball season. My friends will stop by for tea and we’ll sit on the couch, wrapped in blankets and catch up and then, I will lie down to read of nap, my heart refilled from the visit. Even though my body needs to spend most of its time at rest, we have found YouTube channels full of aerial footage from around the world so I can travel without leaving home. When I don’t have the energy to keep track of a plot, I read cookbooks instead of novels and learn about flavors and foods from other cultures. And if I’m really energetic, I’ll order the ingredients and try out a recipe. Or maybe just order a new food for takeout.
Sometimes, I feel like I don’t know myself anymore. Like this body and its (dis)abilities must be someone else because they are nothing like who I knew myself to be. I wonder whether I will ever get my healthy body and the life I thought I would have back or if I’m trapped in this new body forever. But most of the time, I feel like a version the same person, just less frenetic and more like a fragile lady of the 19th century nobility who spends her days reading and working her embroidery (in my case, knitting). While my body is vastly different than it was this time last year, I am still me, just filtered through an energy-limiting condition. I am (I hope), an excellent friend to the people I love - compassionate, loyal, and always willing to be there for the triumphs and the challenges. On the hard days, I focus on listening and being a friend to myself so I can help this body live its best life with me.
You can also listen to this blog post on Spotify: https://open.spotify.com/episode/3RahL9ZTAVtd3u6EoHyD9H?si=1ac40565ca524442