When I told my best friend (really more like a sister!) since elementary school, S, that I was at the hospital and had gotten much more ill, she immediately arranged a trip out here with her family. Her husband (also my friend) N is a student, so I know it’s not an easy thing for them to afford a trip out to the west coast, especially when planned in such a short time.
They were finally here this past week, as soon as the term was over for N. The last time I saw their little boy, J, was when he was just a few days old. I saw him come to this world and I love him to death. My friends well understood I could not afford to have visitors all day and I wanted them to enjoy the Bay Area and the civilization (Our joke! They live in a rural mid-west town). So the plan was for them to visit me every evening.
It worked out nicely. I would pre-rest all day, and they would stay until my bed time. I would immediately rest whatever fatigue I accumulated. One great thing about an old, childhood friend, is that we really are family and there’s no pressure for me to entertain them. It’s just great to see each other, no words necessary. Our evenings mostly consisted of watching J chase around my cats, and that was a good time. I’m so familiar with their voices like my husband’s, so it didn’t overwhelm me like having any other people talk around me – usually, I cannot handle two people in a room talking. They were also mindful about not over-stimulating me. And a lot of times, one of them would have to go chase J anyway to have constant eyes on him in an apartment that was not child-proofed. I saved all my energy to see them. I was not rested enough when I woke up in the morning, so I spent most of the days resting. Naturally I was mostly MIA on social media.
The cyberspace is somewhere I sort of felt like I could be present all the time despite ME. I should have known better not to take it for granted, considering many with very severe ME who can never grab their mobile devices. I have moments that I am too weak to even move my fingers, but I eventually recover soon enough to get back to my phone. But spending a few days actually being present in my bedroom, not simply occupying the physical space, I noticed staying online actually took quite a bit of energy.
It’s another reminder that ME is present in every facet of my life. It enters in every decision and non-decision I make. I want to write on and on and on about how adorable my little nephew is, but I am sure you all know the feeling already, so I choose to use the time and energy writing something else instead (but he is really the cutest little boy in my eyes!).
But it is also a lesson for me that to be present somewhere, sometimes it means we have to be missing elsewhere, with or without ME. We are making constant choices of where to be. And I am grateful that I am allowed to make the decision, even if my options are much more limited than before, because I know ME is a beast that can trap someone in one’s own body, regardless of one’s will.